The Web-Based Personal Health Record - Research Implications For Patients, Consumers, Health Services and UK Industry

The web-based personal health record –
research implications for patients,

consumers, health services and UK
industry
A research scoping study for the Chief Research Officer for
Public Health, Research and Development Department of
Health and the i4i Programme of the National Institutes for
Health Research
October 2008
Document The web-based personal health record – research implications for
Title patients, consumers, health services and UK industry
A research scoping study for the Chief Research Officer for Public Health,
Research and Development Department of Health and the i4i Programme of
the National Institutes for Health Research
Prepared for Dr William Maton-Howarth, Chief Research Officer for Public Health,
Research and Development, Department of Health
Prepared by Mark Outhwaite
Version No Release version
Date: 27 October 2008
Version control
Version No Date Change summary Owner
V7 30/09/08 Pre-release approval draft MRCO
V8 01/10/08 Pre-release DH approval draft MRCO
V9 08/10/08 Finalisation version MRCO
Final 27/10/08 Release version MRCO
Contact details for this report:
Mark Outhwaite, Director HOIP CIC
Email: mark.outhwaite@hoip.eu
Tel: +44 (0)203 2399438 Mob: +44 (0) 7768131770
The research team:

Mark Outhwaite: Project Lead
Annop Singh: Researcher
Denis Carroll: Researcher
Professor Andy Marsh: Researcher and Academic Lead
All members of the project team are Directors of HOIP CIC
Acknowledgements
We are grateful for the support of Richard Foggie Assistant Director, Electronics Innovation
EITSU at the Department for Business Enterprise and Regulatory Reform (DBERR) for his
support in sponsoring the workshops at the Future Focus Facility at DBERR and for his
advice during the project
Our thanks also go to those who made a contribution as interviewees, workshop participants
and contributors during the project
Web based Personal Health Record – Release Version 1

27 October 2008
Table of contents
1 Executive Summary............................................................................................................4
1.1 Introduction..................................................................................................................4
1.2 Policy context ..............................................................................................................4
1.3 The web-based PHR – setting the scene ..................................................................... 4
1.4 Perspectives of participants and contributors ............................................................... 5
1.5 The challenge of commissioning and delivering research in web 2.0 timescales........... 5
1.6 Policy implications and alignment.................................................................................6
1.7 Confidentiality, access and trust...................................................................................6
1.8 The user/consumer perspective ...................................................................................7
1.9 The service perspective ...............................................................................................7
1.10 Technology perspectives ...........................................................................................8
1.11 Industry perspectives.................................................................................................8
2 Summary of research themes.............................................................................................9
1 Introduction ...................................................................................................................... 12
1.1 Background to the report ........................................................................................... 12
1.2 Methodology.............................................................................................................. 12
2 Policy context ................................................................................................................... 14
2.1 Introduction................................................................................................................ 14
2.2 The Health Informatics review.................................................................................... 15
3 The web-based PHR – setting the scene .......................................................................... 16
3.1 The wider context ...................................................................................................... 16
3.2 Web 2.0 – the architecture of participation ................................................................. 17
3.3 Health 2.0.................................................................................................................. 18
3.4 Medicine 2.0.............................................................................................................. 19
3.5 Definitions of the PHR – Personal health record or personal healthcare record .......... 19
3.6 Evolution of the Web-based PHR and Health 2.0 ....................................................... 21
3.7 Forward look – Web 3.0 and Health 3.0 ..................................................................... 23
4 The perspectives of participants and contributors.............................................................. 24
4.1 Summary - Still early days for UK participants............................................................ 24
4.2 Overview themes from the literature review................................................................ 24
4.3 Visions for the future.................................................................................................. 24
5 The challenge of commissioning and delivering research in web 2.0 timescales................ 26
5.1 Summary – ‘the train has left the station’.................................................................... 26
5.2 Respondents’ perspectives........................................................................................ 27
6 Policy implications and alignment ..................................................................................... 29
6.1 Introduction................................................................................................................ 29
6.2 Data Protection & EU Law ......................................................................................... 29
6.3 Setting PHR and Health 2.0 in the wider policy context .............................................. 30
6.4 Policy research themes.............................................................................................. 30
6.5 Participant perspectives............................................................................................. 30
7 Confidentiality, access and trust ....................................................................................... 32
7.1 Data protection context .............................................................................................. 32
7.2 Supporting the user ................................................................................................... 32
7.3 Trust.......................................................................................................................... 33
7.4 The record after death ............................................................................................... 35
8 The user/consumer perspective........................................................................................ 36
8.1 Who are the potential users of PHR and how will they use it? .................................... 36
8.2 Social Networking in Health 2.0 ................................................................................. 37
8.3 Disability and accessibility of the PHR........................................................................ 38
9 The service perspective.................................................................................................... 40
9.1 Challenges and opportunities for clinicians................................................................. 40
9.2 Service impacts and benefits - the asymmetrical challenge of PHR and Health 2.0 .... 41
9.3 Implications for Public Health..................................................................................... 42
9.4 Implications for researchers ....................................................................................... 42
9.5 Health Across boundaries - health tourism ................................................................. 43

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10 Technology perspectives ................................................................................................ 44
10.1 Introduction.............................................................................................................. 44
10.2 Contextual search, Artificial Intelligence and Agents................................................. 44
10.3 Access and security technologies ............................................................................ 44
10.4 Mobile Web 2.0 and its impact on Health 2.0 and PHR............................................. 45
11 The industry perspective................................................................................................. 46
11.1 Introduction.............................................................................................................. 46
11.2 Market Readiness.................................................................................................... 46
11.3 What can we learn from other industries? ................................................................ 47
11.4 Emerging Business Opportunities and Models ......................................................... 47
11.5 Participant Perspectives .......................................................................................... 48
Annexe A - Future Focus Workshop Kernels and Reports.................................................... 49
Annexe B - Online questionnaire responses ........................................................................ 73
Annexe C - Participants and contributors and researchers................................................... 77

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1 Executive Summary
1.1 Introduction
1.1.1 This report was commissioned by the Chief Research Officer for Public Health,
Research and Development Department of Health and the i4i Programme of the National
Institutes for Health Research.
1.1.2 The objective was to identify the key research themes emerging from the development
of the web-based Personal Health Record (PHR) in order to assist with the commissioning of
more detailed research.
1.1.3 The study was undertaken between July and September 2008 by HoIP Community
Interest Company. It involved a series of interviews with opinion leaders, industry experts,
academics and representatives of a number of other groups. Two scenario generation
workshops were sponsored by the Department for Business, Enterprise and Regulatory
Reform (DBERR) at their Future Focus facility in London. The team also sponsored a Panel
discussion at the ICMCC conference at the University of Westminster (video of the discussion
is available on-line). Contributions were also invited through a dedicated wiki, email and the
submission of papers and leading-edge references. Invitations to participate were circulated
through a wide range of networks.
1.1.4 At the end of this Executive Summary we provide a list of all the relevant research
themes emerging from our research.
1.1.5 A full list of useful reading material and references (complete with hyperlinks to the
relevant material on the web) is available as a separate file on request from
web2health@hoip.eu
1.2 Policy context

1.2.1 We have set the research in the context of ‘High Quality Care for All’ (Darzi Report)
which was published during the research period and the Health Informatics Review also
published shortly after the Darzi Report.
1.2.2 The former has a specific section on ‘Health in the age of information and connectivity’
and the need to be able to connect people to reliable health information and to enable them to
engage with others to share experiences and knowledge. It also heralds the implementation
of NHS HealthSpace and the expanded role of NHS Choices
1.2.3 The Health informatics Review builds on this this theme – laying out the intention to
‘ensure that NHS Choices, HealthSpace, homecare and other related services are integrated
and provide a coherent set of information resources.
1.2.4 We are also expecting to see the launch of a Cabinet Office paper on Digital Britain
which will inform the wider UK policy context.
1.3 The web-based PHR – setting the scene

1.3.1 We have examined the evolution of the PHR and the various models that are emerging.
Much of the research and application of the PHR derives from the US, driven by the HIPAA
requirements and increasing patient engagement in Web 2.0 and Health 2.0 collaborative
networks.
1.3.2 The term ‘Personal Health Record’ (PHR) is capable of a wide range of interpretation
depending on the stage of evolution of the PHR and also on the perspectives of those
developing and describing them. Our research suggests that it is useful to draw a distinction
between:

27 October 2008
(a) The Personal Healthcare Encounter Record (PHER) – a detailed longitudinal record of
the outcomes of encounters with healthcare professionals and healthcare institutions.
This will comprise largely clinically coded information (and by coding we mean both
technical coding such as SNOMED, READ, ICD and OPCS and the jargon based
code of clinical language and terminology including the recorded observations and
comments of the clinicians in contact with the patient).
(b) The Personal Health Record (PHR) – a record comprising the Personal Healthcare
Encounter Record and a much wider range of personal health, social, demographic,
financial, economic, family and social-network based data, information and knowledge
resources.
1.3.3 The research also highlights the range of interchangeable terminology that is used in
this area including Web 2.0, Medicine 2.0 and Health 2.0. Web 2.0 has been described as the
‘architecture of participation’, leveraging the network effects of large numbers of participants
to collaborate, generate new content, self-regulate and to innovate.
1.3.4 Our view is that these differences are not fundamental. Enabling patients with Web 2.0
tools, if it follows other Web 2.0 trends, is likely to lead to significant challenges to current
models of healthcare delivery as well as revealing significant opportunities to improve citizen
health and patient outcomes. The real challenge is the extent to which current healthcare
systems rise to the challenge and fully enable and help citizens and patients exploit the new
opportunities to break the mould or seek to constrain development to the current mould.
1.3.5 We also review the pace of development in this area. Much of the literature and
commentary originates from the US. Our view is that the incentive structure for users and
business within the US is different to that in the UK and this will lead to faster adoption of the
PHR (as opposed to the PHER). In the UK HealthSpace is in effect a PHER with some added
transactional and informational functionality. We believe that uptake of the PHR in the UK will
only begin to make significant progress when there is sufficient value-added functionality to
make it attractive to individuals.
1.4 Perspectives of participants and contributors

1.4.1 We have examined some of the over-arching themes that emerge from the workshops
and interviews.
1.4.2 A distinct feature has been the relative immaturity of the debate on PHR and Health 2.0
within the UK. In particular much of the literature and debate is focused around a medical
view of Health 2.0 and the PHR – how it supports current processes and transactions
including interactions between clinicans rather than on how to exploit its potentially disruptive
effects. It might be that the debate is simply ‘behind the curve’ in the UK but there are also
hints of the normative NHS approaches to patients at play. This makes exploiting the potential
of the PHR and Health 2.0 more difficult. Do we really trust patients to generate their own
content and advice and support each other? It also makes the potential impact more painful.
1.4.3 The workshops were focused on scenario generation and provide some thought
provoking material to stimulate further debate.
1.5 The challenge of commissioning and delivering research in web 2.0

timescales
1.5.1 A specific issue that began to emerge in our review of the responses and interviews and
our assessment of the literature is the current model for commissioning and delivering
research, in particular timescales. Currently research projects can take up to 3-4 years from
the initial call for proposals to the final delivery of the finished product. In terms of the rapid
evolution of the Internet this sort of timescale is too long for anything other than a
retrospective evaluation for the history books. In the early days of the discussions about the
future of the Web and the applicability of Web 2.0 to Health this might just have been
adequate but as the pace of innovation and exploitation begins to accelerate internationally

27 October 2008
research time-cycles must also pick up the pace. Research that is required to inform policy
and practice around the PHR and Health 2.0 needs to be timely if it is to be of use.
1.5.2 We suggest that there is a need to review the process and pace of the commissioning
cycle and the type of research that is being commissioned and disseminated. We believe
there needs to be an integrated portfolio of research approaches commissioned from a single
point that when combined effectively balances the need for anticipation of and rapid response
to fast evolving trends with the ability to maintain a level of appropriate quality and rigour.
1.5.3 We also recommend that more attention be given to the pace and effectivess of
dissemination – in particular using Social Networking and other Web 2.0 methodologies to
ensure findings get to where they are needed as quickly as possible. We suggest the
effectiveness of dissemination should be part of the evaluation of research providers in this
area.
1.6 Policy implications and alignment

1.6.1 Many of the research themes identified within the report have policy implications. As
research into this area begins to take shape there will need to be a specific approach in place
to synthesise the results and identify key implications for policy.
1.6.2 The major themes emerging from the research related to Data Protection and in
particular the emerging discussions around the EU approach and their potential impact on the
adoption and exploitation of the PHR.
1.6.3 Discussions about market regulation within the EU also surfaced and we make specific
recommendations in relation to this area as well as to collaboration and research.
1.7 Confidentiality, access and trust

1.7.1 As might be expected given the intensity of recent debates within the UK about data
confidentiality and in particular the consultation conducted by Connecting for Health and the
recent Data Sharing Review1 undertaken by the Information Commissioner, Richard Thomas,
and the Director of the Wellcome Trust, Dr Mark Walport there was a significant focus on
issues of confidentiality, record access and trust within the replies of respondents and
participants as well as within the literature
1.7.2 Our research suggest that in the context of the PHR and Health 2.0 that there needs to
be more effective ways of providing users with real-time support to understand the disclosure
and sharing choices that they will be faced with. How many people really read the EULA
before they install new software (including Google’s)?
1.7.3 Currently much of the debate and policy around confidentiality is framed from the
perspective risk minimisation and the duty of the clinician to protect individual patient
information. There is less research on the way citizens and patients assess the risk/benefit
balance in sharing personal information to gain personal value. This also expands to family
and carer access.
1.7.4 We do question the assumption that individuals will actually want to access their
detailed PHER and whether only the most ardent ‘activist’ patient would understand the
content especially as volumes of data accumulate over time. We think it more likely that there
will be a growth in tools that synthesise and summarise the data into ‘health dashboards’
which can be tailored or ‘mashed-up’ by patients. In this case we will need to examine the
access rules governing automated systems and how patients can give access to certain
elements of the dashboards to family and carers.
1.7.5 We have also looked at the issue of Trust –
1
Data Sharing Review Report 11 July 2008 http://www.justice.gov.uk/reviews/datasharing-intro.htm

27 October 2008
Do clinicians trust patients to generate content enough to include it within the clinical
decision making;
Who does the patient trust to contribute information to their PHR in terms of data such
dispensing details (as opposed to prescribing details) and to provide information and
support;
Who does the patient trust in terms of providing access to their data in their PHER and
PHR?
1.7.6 We suggest that research into ‘Trust’ and accreditation frameworks and the
characteristics of effective ‘Trust’ relationships would be very useful.
1.7.7 We also address the issue of what happens to the PHR after the death of the owner.
1.8 The user/consumer perspective

1.8.1 There is very little current published research into the potential uptake of PHRs within
the UK and just who are the groups most likely to use a PHR and when within their life
journey.
1.8.2 We do know that the penetration of Social Networking using Web 2.0 is higher in the UK
than in the rest of Europe and so can speculate that the uptake of the ‘collaborative
architecture’ elements of Health 2.0 might be faster in the UK.
1.8.3 However there is a requirement for much more detailed market research into the
potential user community and how they might interact with, exploit and contribute to the PHR
and peer communities. This will also provide insights into the channels different groups might
be using to interact with their PHR and ‘Health Dashboard’.
1.8.4 We have also raised the issue of disability and the challenges this will present for
disabled individuals in fully participating in and gaining value from the PHR. We have used
the contribution of the chair of CACHE (Collaboration for Accessibility and Communications in
Health and Education) in this section.
1.8.5 We also highlight the emerging use of predictive markets in other industries and their
potential application within health.
1.9 The service perspective

1.9.1 In this section we have highlighted the main opportunities and challenges for clinicians,
potential the service impacts and benefits and implications for Public Health and Bio-medical
research.
1.9.2 The sheer pace of change is in itself a challenge, as is the ability of patients to be as
well informed as their doctors in many cases. The use of Web 2.0 technologies to support
clinical training and continuing professional development as well as knowledge sharing and
mutual support is already well established. The challenge is to translate that learning to the
relationship between clinician and patient.
1.9.3 However the reach and impact of the disruptive clinical innovator is massively
expanded. Whereas pre-internet the disruptive clinical innovator was safely geographically
constrained the web gives substantially greater potential impact.
1.9.4 A number of participants highlighted the fast moving nature of the development of
Health 2.0 and speculated that the development of the fully fledged PHR with its portability
would require organisations to be more agile and responsive, give specialist providers with
condition specific expertise much wider reach and touch the role of all clinicians.
1.9.5 The Public Health debate within UK about the opportunities of Health 2.0 and PHR is at
best muted. Our view is that whilst there may be isolated pockets of thinking about the use of
PHR and Health 2.0 in relation to Public Health the topic is still at its early stages of

27 October 2008
development and is a fruitful area for early research in order to help shape future Public
Health policy and practice.
1.10 Technology perspectives

1.10.1 It was not the core purpose of this project to delve too deeply into the technology
underlying the PHR and Health 2.0. However inevitably a number of technology issues were
raised by participants in the research which we think are useful to highlight as potential topics
for further research and are specifically relevant to the PHR.
1.10.2 The three main areas for further research in this area are:
(a) Meaning Based search, Artifical Intelligence and Agent technologies – driven by the
rapidly accumulating amounts of both structured and unstructured data and the neeed
to use technology to make sense of it for patients, clinicans and researchers.
(b) Access and security technologies – striking a balance between complex security and
PHR uptake and benefits.
(c) Mobile Web 2.0 and its impact on Health 2.0 and the PHR – building on the near
ubiquity of the mobile phone and its integration into the lifestyle of a growing
proportion of the population (Digital Natives).
1.11 Industry perspectives

1.11.1 Feedback from industry participants has been included within the report. The question
is whether technology is ahead of the market and to what extent is the market ready? Is there
a clear business case and supporting business models for the widespread take-up of PHRs?
What lessons can we learn from other industries?
1.11.2 The majority of business start-ups in this space are in the US. Whilst at one level this
can be seen as path-finding for the UK – with the risks being taken in the US and learning
trickling down into the UK – there is also a lack of emerging innovation and potential
business interest within the UK in the design and development of new services to support the
PHR and Health 2.0. Promoting innovation and the growth of value-added services within the
UK may well rest on NHS HealthSpace encouraging the development of a vibrant eco-system
of providers in order to create a true NHS PHR.

27 October 2008
2 Summary of research themes
This section provides a list of all the research themes that have been identified as part of the
scoping project. Readers are invited to take part in an online questionnaire to categorise
these themes by their level of strategic or operational priority and the timescale within which
the research needs to take place. The survey can be found through this link. The closing date
for the survey is 1 January 2009.
The perspectives of participants and contributors
Research challenge: Commissioning provocative research that is explicitly framed to
challenge centrally driven and medical paradigms – with an increased focus on citizen
perspectives, values and participation. ................................................................................ 24
The challenge of commissioning and delivering research in web 2.0 timescales

Research theme: We suggest that one approach to shortening the commissioning cycle and
yet ensuring that there is a sufficient range of perspectives and expertise to be brought to the
research at each stage would be to tender a framework contract for Health 2.0 research and
select a small group of organisations (possibly academic and private sector research
organisation partnerships) to be part of the framework. Subsequent commissioning would be
simplified and follow normal tender rules for framework contracts. ....................................... 27
Research theme: Providers selected to join the Health 2.0 research framework should be
assessed not only on research and mobilisation capability but also on their approach to rapid
dissemination, the evaluation of the success of dissemination and the assessment of the
uptake of research findings.................................................................................................. 27
Research theme: How to accelerate and measure the dissemination and uptake of research
using Social Networking and other Web 2.0 methodologies. ................................................ 27
Policy implications and alignment
Policy Research theme: DATA PROTECTION: The governance arrangements for health
record data created and used by multiple agencies and users, potentially across multiple
jurisdictions both inside and outside the EU (taking in to consideration existing UK and EU
legislation)?......................................................................................................................... 30
Policy Research theme: MARKET REGULATION: Creation of a free market for PHR
vendors to participate in, while at the same ensuring that individual users and national health
systems are adequately protected – there is a need for governments to strike a balance
between “protection” and “control”? ..................................................................................... 30
Policy Research theme: RESEARCH: The use of health records for research. How can data
from combined EHRs and PHRs be used, with the consent of the data owners, for clinical
research and translational research in the public health arena? ........................................... 30
Policy research theme: COLLABORATION: Consistency, transparency and cooperation
across EU countries and other jurisdictions in order to create a harmonised environment for
EHRs and PHRs to be implemented, especially with regard to legal and compliance issues,
and cross-border transactions ............................................................................................. 30
Confidentiality, access and trust
Research theme: Bring confidentiality and privacy alive for individuals – what is best practice
in educating and alerting individuals to confidentiality and privacy issues within the context of
routine interactions with the PHR......................................................................................... 32
Research theme: What are the best ways of synthesising and presenting summaries of
underlying data to permit tracking trends in individual health status and well being as well as
presenting advice and information whilst protecting the confidentiality of the underlying
detailed data? ..................................................................................................................... 33
Research theme: How do citizens and patients weigh up the risks and benefits of sharing
personal health and healthcare information? When does benefit outweigh risk? What sort of
information are individuals willing to share for a defined benefit assuming that the information
is shared with a ‘trusted’ service provider?........................................................................... 33

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Research theme: Family and carer access to the PHR – where are the potential realisable
benefits and the accompanying risks and what are the best approaches to achieving these
benefits balancing accessibility, confidentiality and privacy. What sorts of permission and
access models are required to support family and carer access? ......................................... 33
Research theme: The development of Trust and accreditation frameworks for the PHR – how
do individuals establish ‘trust’ relationships with providers and peer groups and what are the
characteristics of effective Trust relationships? .................................................................... 35
Research Theme: The record after death – implications, opportunities and risks? .............. 35
The user/consumer perspective
Research theme: Who are the potential users of the PHR, what aspects of the PHR are they
most likely to find of value, what channels would they find of most use to access and supply
information, what are the barriers to adoption and what would ‘activate’ more UK citizens and
patients to use the PHR?..................................................................................................... 36
Research theme: Identify the current leading edge of PHR and social networking users in the
UK and develop co-research methodologies to learn from early experience......................... 37
Research theme: The impact of social networking and peer-support groups in health and
healthcare on the ability of individuals to achieve improved self-defined health outcomes. ... 37
Research theme: What are the most effective channels/methodologies for influencing
individual behaviour within the PHR context and how do they vary with different groups of
users? ................................................................................................................................. 38
Research theme: The effectiveness of peer regulation on content and usability. The role of
expert moderator and methodologies to respond rapidly to inaccurate information spreading
through networks................................................................................................................. 38
Research theme: Current usage of health information sites by UK residents ...................... 38
Research theme: The use and value of prediction markets in healthcare research ............. 38
Research theme: Providing access to PHR and Health 2.0 related services for those with a
disability.............................................................................................................................. 39
The service perspective
Research theme: The impact of Web 2.0 on the reach of the disruptive clinical innovator. .. 40
Research theme: The impact of the PHR and Health 2.0 on the role of clinicians – how to
make the transition effectively.............................................................................................. 40
Research theme: the impact of the PHR and Health 2.0 on current care processes – benefits
and challenges.................................................................................................................... 41
Research theme: the use of Web 2.0 to support continuing professional development and
the uptake of evidence – current practice and opportunities. ................................................ 41
Research theme: Modelling the potential impact of different levels of uptake of PHR and
Health 2.0 services on current patterns of service provision – benefits and challenges......... 42
Research theme: Public Health, Health 2.0 and the PHR – opportunities and priorities for
engagement. Focusing on both surveillance and public health intelligence and on targeted
public health campaigns using the PHR intelligence, Social Marketing over Web 2.0 channels
........................................................................................................................................... 42
Research theme: Development of standard PHR tools to support the anonymisation of data
and that allow the individual to release access to researchers with confidence – described as
the ‘Research Window’ on the PHR. .................................................................................... 42
Research theme: How best to inform and engage patients in making informed decisions
about participation in research through the PHR portals....................................................... 43
Research theme: Linking external data repositories to the PHR. Security, confidentiality and
consent. .............................................................................................................................. 43

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Research theme: The use of social networking and predictive markets techniques to engage
patients and individuals as co-researchers .......................................................................... 43
Technology perspectives
Research theme. Deriving sense and meaning from PHR data and information for
individuals, clinicians and researchers – the application of computational methods to
analysing, synthesising and presenting information and knowledge ..................................... 44
Research theme. The impact of different models of access control on PHR uptake and usage
........................................................................................................................................... 45
Research theme: How mobile Web 2.0 will translate into mobile Health 2.0 – in particular
how users are likely to want to use their devices to access PHR information and the most
effective methods for realising the potential of mobile web 2.0. ............................................ 45
The industry perspective
Research theme: What interoperability standards are available and are required to support
the interchange of structured and unstructured health information between different PHRs and
EMRs? ................................................................................................................................ 47
Research theme: What standards are required to support the description of health
information to support health related search and effective linkage with PHRs – and what are
the implications of the development of the semantic web? ................................................... 47
Research theme: What are the UK market opportunities for the provision of value-added
Health 2.0 services to extend the functionality and user attractiveness of the PHR............... 48
Research theme: What is the current position of innovation and business development in the
UK Health 2.0 market? How can innovation and start-up businesses best be supported? .... 48

27 October 2008
1 Introduction
1.1 Background to the report
1.1.1 HOIP CIC was commissioned to undertake a scoping study into the implications of the
web-based personal health record (PHR) and the resulting research priorities on behalf of the
NIHR invention for innovation (i4i) programme and for the DH Policy Research Programme.
1.1.2 The advent of the individually owned and controlled web-based personal health record
(Google Health, Microsoft Health Vault and NHS HealthSpace amongst others) creates new
opportunities and challenges for consumers, patients, clinical professionals, public and private
sector health providers, insurers, industry and policy makers. Often taking advantage of
technologies and services developed in other sectors we expect to see an ecosystem of
products, services and networks developed around the PHR that provide the individual with
the ability to more effectively personalise and manage their own health experience. For
instance individuals are able to have multiple network affiliations that allow them to define
themselves not primarily by their condition but by their key business and leisure interests with
the condition being a subset within these networks (Divers with diabetes for example).
1.1.3 These developments have the potential to be highly disruptive to traditional models of
service delivery, to existing healthcare pathways and to relationships between healthcare
professionals and consumers/patients. For example services that allow aggregation of PHR
and socio-economic data and profile that data to suggest relevant social networks and advice
sources, predict risk and provide advice on staying healthy unconstrained by national
boundaries.
1.1.4 The purpose of the study is to define the key challenges and opportunities from the
perspectives of the main stakeholders and from this provide an agenda for the specification of
further more detailed research by the Department of Health. The intention is that the
subsequent more detailed research will ensure that the patients and consumers, the UK
healthcare system and its partners in UK industry are better positioned to take advantage of
this rapidly developing environment.
1.2 Methodology
1.2.1 The project was formed around the following activities:
(a) Semi-structured Interviews – the team undertook 14 interviews seeking views on the
challenges and opportunities of the web-based PHR and to better understand the
range of perspectives and maturity of thinking within England.
(b) Future Focus workshops – two futures workshops were hosted by BERR at its Future
Focus facilities at 1 Victoria Street with a total of 15 non-HoIP participants
(c) Panel discussion at ICMCC – HOIP sponsored a PHR panel session at the annual
conference of the International Council on Medical and Care Compunetics at
Westminster University. Videos of the discussion are available online at
http://conferences.icmcc.org/?p=2084
(d) A HoIP social network (http://hoipcic.ning.com) was set-up to promote online

discussions and to ascertain opinion from a range of contributors on the Web-based
PHR. The social network included forum discussions, news articles and blogs.
(e) A call for contributions from interested parties
(f) Literature review - a literature review was undertaken focusing on both the development
of web based technologies and the ecosystem associated with web-based PHR. A
full list of useful reading material and references (complete with hyperlinks to the

27 October 2008
relevant material on the web) is available as a separate file on request from
web2health@hoip.eu
(g) Sessions at WORLCOMP 08 - a number of dedicated HoIP sessions were held at the
WORLCOMP 08 congress in Las Vegas with over 2000 delegates from 84 countries
including US agencies (NSF, NIH), Senior policy makers and national representatives.
The aims of the interactive sessions were to ascertain the international perspective on
web-based PHR through interviews, one-to-one discussions, panel debates and a
questionnaire.
(h) An option for a series of on-line interactive workshops using the Health Technologies
Knowledge Transfer Network web-conferencing facilities was offered but there was no
uptake of the offer.
1.2.2 The project team have analysed and synthesised the outputs from these activities to
provide this report. In the relevant sections we summarise the key issues, provide insights
into the range of respondents’ perspectives on the topic and provide a series of
recommendations for key research themes.
1.2.3 Before reading this document in full we recommend you watch the brief YouTube
introduction created for the Health 2.0 20072 Conference. Whilst created for a US healthcare
audience it provides a thought provoking scene setter for the Health 2.0 discussion.
http://uk.youtube.com/watch?v=eAUH1lX54z8
2
http://www.health2con.com/

27 October 2008
2 Policy context
2.1 Introduction
2.1.1 Within the UK the policy context for the web based PHR has recently been highlighted
by ‘High Quality Care for All’3 published shortly after this report was commissioned. The main
themes of the report are focused on ‘high quality care for patients and public’
2.1.2 The report identifies 6 main challenges:
Ever higher expectations
Demand driven by demographics
Health in an age of information and connectivity
The changing nature of disease
Advances in treatments
A changing health workplace
2.1.3 The third challenge – Health in an age of information and connectivity is described thus:
Across society, the internet has transformed our relationship with information.
High-speed web access is found in millions of homes. By 2012, 74 per cent of
UK homes are expected to have broadband internet access, transforming how
people will seek and use information in their lives.
The implications for health and healthcare are profound. It is easier to access
information on how to stay healthy than ever before. People are able to quickly
and conveniently find information about treatment and diseases in a way that
was previously impossible. They are able, and want, to engage with others
online, sharing information and experiences. They want to do their own research,
reflect on what their clinicians have told them and discuss issues from an
informed position. The challenge is ensuring that people are able to access
reliable information. Evidence shows that clinicians have sometimes been slower
in exploiting the potential of new information sources, such as the internet, than
others. If that trend continues, there is a danger that people will have to navigate
through myth and hearsay, rather than get easy access to evidence-based
medical knowledge.
2.1.4 The report then sets outs it ambitions to using technology to achieve more personalised
care
Achieving the strong partnership that characterises personalised care is only

possible through greater ‘health literacy’. Too few people have access to
information about their care or their own care record.
This more personalised and joint approach extends the original commitment to
care plans in the Our health, Our care, Our say White Paper.
We will change this. We will expand the educational role of the NHS Choices
website. We will introduce HealthSpace online from next year, enabling
increasing numbers of patients to securely see and suggest corrections to a
summary of their care records, to receive personalised information about staying
healthy, and to upload the results of health checks for their clinician(s) to see.
3
http://www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/DH_085825

27 October 2008
All patients will have a right to see the information held about them, including
diagnostic tests. We will ensure that patients’ right to access their own health
records is clear by making this part of the NHS Constitution.
2.2 The Health Informatics review

2.2.1 The Health Informatics Review4 published shortly after ‘High Quality Care for All’
examined more specifically the progress on the implementation of the NHS IT strategy and its
alignment with the High Quality Care for All. It makes specific reference to the future of the
NHS PHR – HealthSpace:
The proposed increase in the scope of NHS Choices and HealthSpace will
provide an integrated service, delivering extensive qualitative benefits in patient
choice, care personalisation and self-care.
Specific benefits include:
increasing patient safety and the quality of care: for example, the extra
information provided by patients via HealthSpace will allow them to jointly
manage their health, have access to their care plans, become ‘expert patients’
and provide a more complete picture on which clinical decisions can be based;
improved efficiency and effectiveness: for example, better self-
management of long term conditions by patients will improve outcomes and
enable the health service to redirect resources;
providing targeted information on health and health services with specific
work around the development of care pathways (e.g. for coronary heart
disease);
improved experience for patients and service users: for example, because
they are able to state their preferences, they can give feedback and have
greater involvement in their healthcare or may indicate that they wish to
receive information on clinical trials pertinent to their condition.
Through advances in technology, there are chances to adopt easy-to-use
assistive technologies (e.g. for home monitoring) which will allow patients to play
a greater part in their own care, in a more convenient setting. Demonstrator
projects are underway, and these will look at how we can introduce such
equipment, improve the quality of life of patients and integrate with our work on
HealthSpace.
The aim is to ensure that NHS Choices, HealthSpace, homecare and other
related services, such as NHS Direct, are integrated and provide a coherent set
of information resources. This will empower patients and the public, through
access to their health records to drive improvements in quality.
4
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086073

27 October 2008
3 The web-based PHR – setting the scene
3.1 The wider context
3.1.1 This project needs to be set within the wider context of the evolution of the Internet and
the World-wide-Web and its projected development if the key opportunities and challenges
are to be properly understood. It is largely developments stemming from other sectors of the
Internet that are driving the rapid evolution of the ecosystem of web-based services that form
the web-based Personal Health Record. By observing and tracking trends in the provision of
web-based services in other industries it is possible to predict how those approaches are
likely to impact health and healthcare.
3.1.2 In the next sections we will provide a brief definition of Web 2.0 to set the wider context.
We will also examine Health 2.0 and Medicine 2.0 – two terms that are now emerging within
the literature to describe the translation of Web 2.0 into the health and healthcare arena. Our
emerging view, which informs our review of the research themes for the web-based PHR, is
that there is a need to provide some common language and understanding to underpin the
debate and the need for which is illustrated by the sometimes interchangeable use of the
terms Medicine 2.0 and Health 2.0.
3.1.3 Medicine 2.0 appears to be more often used to refer to the use of Web 2.0 approaches
to support professional collaboration, research and knowledge generation between clinical
professionals. We have found within our research and interviews that often Medicine 2.0 has
been used to describe relationships between clinician and patient enabled by the Internet.
However our perspective is that what this is actually describing in many cases sits very firmly
within the traditional healthcare paradigm of the relationship between doctor and patient and
is more the application of Web 1.0 technologies which simply provide a degree of technology
‘lubrication’ and technology-driven efficiency to the traditional doctor-patient relationship. This
might charitably described as Medicine 1.x.
3.1.4 We also seek to draw a distinction between definitions of the PHR. In the following
sections we would suggest that there are two elements:
(a) The Personal Healthcare Encounter Record (PHER) – a detailed longitudinal record of
the outcomes of encounters with healthcare professionals and healthcare institutions.
This will comprise largely clinically coded information (and by coding we mean both
technical coding such as SNOMED, READ, ICD and OPCS and the jargon based
code of clinical language and terminology including the recorded observations and
comments of the clinicians in contact with the patient).
(b) The Personal Health Record (PHR) – a record comprising the Personal Healthcare
Encounter Record and a much wider range of personal health, social, demographic,
financial, economic, family and social-network based data, information and knowledge
resources.
3.1.5 Our experience and research indicates that it is important to recognise the both the
distinction and the relationship between these two elements as it provides a more effective
frame for categorising the key opportunities and research priorities.

27 October 2008
3.2 Web 2.0 – the architecture of participation
3.2.1 There are a number of variations on a
theme when seeking definitions for Web 2.0.
Depending upon the perspective of the author
definitions will vary in emphasis but all have
common themes. O’Reilley and Battelle in an
opening talk at one of the first Web 2.0
conferences in 20045 described the key theme of
Web 2.0 as the ‘architecture of participation’
which leverages the power of networking effects
created by connecting very large numbers of
information and knowledge contributors and
providing the means for them to collaborate and
generate new content. The means of Knowledge
Production is ‘distributed’ rather than centralized.
In addition the power of Web 2.0 is to mobilise
the ‘Long Tail’6 – to provide opportunities for the
connection of minority interests and groups to
enable a ‘grossing-up’ of numbers to create
either financial value to business seeking to sell
to these groups or to enhance ‘knowledge-value’ Source: Dion Hinchcliffe’s Web 2.0 Blog -
http://web2.socialcomputingmagazine.com/
to participants in these groups or to organisations
seeking to better understand these otherwise hard to reach/find groups. The simple diagram
created by Dion Hinchcliffe in his blog in Social Computing Magazine provides a useful
illustration.
3.2.2 Web 1.0 was very much a ‘push’ model of service delivery and information provision
based on a top-down view of how service and information markets should be segmented.
Web 2.0 provides individuals with the power to ‘self-segment’ – to create their own personal
labels or tags to describe their interests and to find common cause with others who fit those
self-generated descriptions. It also provides them with the means to create their own
personalised information and collaboration environments tailored to the way in which they
seek to define themselves rather
than definitions imposed upon them
by state or commercial
organisations.
3.2.3 In addition an important

feature of Web 2.0 has been the
emergence of the consumer as
innovator. The distribution of
technology through open-source or
free services and the creation of
new communities and new
capabilities to personalise and
exploit information has led to greater
opportunities for innovation and also
much greater visibility of innovation
as it emerges. Network effects
Source: What Is Web 2.0 - Design Patterns and Business Models for the Next Generation
provide not only accelerated of Software, Tim O’Reilley 30/09/2005
momentum for innovation but also http://www.oreillynet.com/pub/a/oreilly/tim/news/2005/09/30/what-is-web-20.html?page=1
for the accelerated spread and
adoption of innovation perceived as useful by members of the network. Peer-based regulation
and ranking are just one of the features that support this process. Predictive Markets
methodologies can be used to draw on the collective experience of participants to identify
trends and make predictions.
5
John Battelle and Tim O’Reilley; Opening Welcome Presentation at Web 2.0 2004 Conference
http://conferences.oreillynet.com/presentations/web2con/intro_tim_john.ppt
6
“The Long Tail”: Chris Anderson, Wired Magazine October 2004; http://www.wired.com/wired/archive/12.10/tail.html

27 October 2008
3.2.4 Web 2.0 is terminology that can
also be used to describe the range of
services and platforms that have been
created to support the ‘architecture of
participation’. Tim O’Reilley who has led
much of the thinking about Web 2.0
within the US7. A diagram from one his
articles again helps to illustrate the eco-
system that is encompassed by Web 2.0
3.3 Health 2.0 Source: John Sharp Cleveland Clinic Presentation Web 2.0 in clinical research 31 July
2008 www.slideshare.net/JohnSharp/web-20-in-clinical-research
3.3.1 The NHS Confederation in a recent (2008) Futures Debate Paper on Disruptive
Innovation8 describes the potentially disruptive impact of Web 2.0 on healthcare:
The impact of Web 2.0 on the balance of power and knowledge between patient
and professional is enormously significant. It has the potential to make
information available to patients and carers from across the world in formats that
are relatively easy to understand and which contain knowledge previously only
available to professionals.
This includes creating communities of interest where patients and families can
exchange information, lobby for change and find support and advice from each
other. The concept of ‘prosumers’ – consumers who are so expert that
companies use them in social networks as a source for innovative product
development ideas – has not taken off in health, but the opportunity is there,
particularly in the area of rare specialist diseases. There are similar opportunities
in commissioning.
3.3.2 There is a difference between commentators in relation to Health 2.0 definitions and the
opportunities that Health 2.0 represents in terms of outcomes for citizens and patients as well
as opportunities for healthcare providers and business. These range from the more ambitious
illustrated by the NHS Confederation Paper above – in effect seeking to fundamentally
change the nature of the relationship between the individual and the healthcare system to
those who simply see it as the application of Web 2.0 technologies in support of current
healthcare models (see http://health20.org/wiki/Health_2.0_Definition for a good illustration of
the nature of the debate). Another excellent recent paper for the California Healthcare
Foundation9 focuses on the social networking and network effects benefits possible within
Health 2.0 as a source of value and disruption.
3.3.3 Our view is that these differences are not fundamental – enabling patients with Web 2.0
tools, if it follows other Web 2.0 trends, is likely to lead to significant challenges to current
models of healthcare delivery as well as revealing significant opportunities to improve citizen
health and patient outcomes. The real challenge is the extent to which current healthcare
systems rise to the challenge and fully enable and help citizens and patients exploit the new
opportunities to break the mould or seek to constrain development to the current mould.
3.3.4 The power of the web to enable the consumer to search for their own healthcare
information has been described as ‘disintermediation’ – the removal of the intermediary role
played by the healthcare professional. However the advanced healthcare professional and
healthcare organisation may well be seeking to translate the new relationship into
‘apomediation’10
7
Tim O’Reilley; What is Web 2.0 - Design Patterns and Business Models for the next generation of software,
http://www.oreillynet.com/pub/a/oreilly/tim/news/2005/09/30/what-is-web-20.html?page=1
8
Disruptive Innovation – what does it mean for the NHS? NHS Confederation Futures Debate Paper 5 June 2008
http://www.debatepapers.org.uk/pdf/Futures-Debate-5.pdf
9
Sarasohn-Kahn, Jane. “The Wisdom of Patients: Health Care meets online social media” Calfornia HealthCare
Foundation April 2008. http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=133631
10
Eysenbach, Gunther. “Credibility of Health Information and Digital Media: New Perspectives and Implications for
Youth." Digital Media, Youth, and Credibility. Edited by Miriam J. Metzger and Andrew J. Flanagin. The John D. and

27 October 2008
3.3.5 As the role of “human” intermediaries diminishes or changes, consumers and patients
are finding new ways to locate relevant and credible information. The agents that replace
intermediaries in the digital media context may be called “apomediaries,” because rather than
mediating by standing “in between” (inter-) consumers and the services or information they
seek, they “stand by” (apo-) and provide added value from the outside, steering consumers to
relevant and high-quality information without being a requirement to obtain the information or
service. While the traditional intermediary is the “expert,” apomediaries consist of a broader
community including experts, parents, teachers, peers, and the like, who are networked in a
digital environment.
3.4 Medicine 2.0

3.4.1 Medicine 2.0 is more often used within the context of the clinician interaction with the
patient and with colleagues and peers. It is also more commonly found within the sphere of
biomedical research and clinical training and education. Our observation is that the use of
Medicine 2.0 is more common amongst healthcare professionals and Health 2.0 more
common amongst non-clinicians – in particular patients and business.
3.4.2 There is a risk that the term ‘Medicine 2.0’ is seen as confirming the existing clinician-
patient paradigm and there is some discussion along these lines in the ‘blog-sphere’.
However we would suggest that Medicine 2.0 is perfectly valid as a term for environments
where the interactions are predominantly between clinicians either as part of patient
treatment, research, education and continuing professional development. Web 2.0
technologies have significant contributions to make to improving medical practice and as we
discuss later greatly increases the reach and potential impact of the disruptive clinical
innovator.
3.4.3 At this stage we would suggest that wherever two or more people are gathered together
to discuss Health 2.0 and Medicine 2.0 that a little time is spent to start with sharing and
aligning definitions in order to establish a common platform of understanding.
3.5 Definitions of the PHR – Personal health record or personal

healthcare record
3.5.1 In conducting the research it became clear from interviews and literature reviews that
there were differing interpretations of the term Personal Health Record within the context of
Health 2.0 and Medicine 2.0. Examining actual instances of what are described as Personal
Health Records also reveals a degree of diversity. Some of these differences are a natural
product of the diversity of the debate, the current state of development of thinking and the
optimism of the web entrepreneur. However we think it useful to highlight two key elements
which are important to help clarify the research themes we describe in the report. They are
also useful in helping categorise the different offerings that are appearing in this space.
3.5.2 At its simplest the difference that emerges lies between what could be described as the
Personal Health Record and the Personal Health Care Encounter Record and the relationship
between them.
3.5.3 The Personal Healthcare Encounter Record (PHER) – a detailed lifelong record of the
outcomes of encounters with healthcare professionals and healthcare institutions. This will
comprise largely clinically coded information (and by coding we mean both technical coding
such as SNOMED, READ, ICD and OPCS and the jargon based code of clinical language
and terminology including the recorded observations and comments of the clinicians in
contact with the patient). It includes the tools required by clinicians and patients to make
effective use of the record including messaging, test alerts and appointments booking.
3.5.4 The Personal Health Record (PHR) – a lifelong record comprising the Personal
Healthcare Encounter Record and a much wider range of personal health, social,
Catherine T. MacArthur Foundation Series on Digital Media and Learning. Cambridge, MA: The MIT Press, 2008.
123–154. doi: 10.1162/dmal.9780262562324.123
http://www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123?cookieSet=1

27 October 2008
demographic, financial, economic, family and social-network based data, information and
knowledge resources. This includes the tools required to connect the different data and
information sources, manage security and to synthesise, analyse and represent it through
different channels and interfaces.
3.5.5 There are a number of different diagrammatic illustrations of Health 2.0 and the place of
the web-based PHR within the system. Clicking through on the smaller diagrams adjacent to
this section will take the reader to some of the descriptions to be found. For the purposes of
this study the diagram below illustrates our approach to the definition set within the context of
the NHS in the UK.
The Personal Health Record

Personal Healthcare Encounter
Record AI driven analysis and contextual
Highly secure clinical encounter search and synthesis powering all
record derived from EPR/SCR – not three layers to provide support to
modifiable (but annotatable) by clinician, patient and authorised
patient and viewable only by carers. APIs power a range of value
authorised clinician and patient added applications
Created by [http://scottshreeve.blogspot.com Scott
Shreeve, MD]] and licensed under the Creative
Commons Non-Commercial Attribution 2.5 License.
Secure added-value trusted data

provider level – accessible to
clinicians when authorised by Wider layer providing contributory,
patient. Elements accessible to contextual information for value-
trusted providers and carers as added health and well-being
authorised by patient services.
© HOIP CIC 2008
3.5.6 The diagram is not meant

to imply a unified product offering
all aspects of the Personal
Health Record – indeed any of
the components could be
provided by different services
and each of the segments in
each of the sectors could take
different forms. What the diagram
seeks to illustrate the relationship
between the Personal Healthcare
Encounter Record and the wider
Personal Health Record. For
comparison a representation of
HealthSpace contained within the
recent Informatics Review is
shown alongside.
3.5.7 There is a wide range of PHR products and platforms being promoted – most in health
systems where the fragmented nature of provision provides an incentive for patients to take
control of their own record and seek to aggregate healthcare encounter information for

27 October 2008
themselves through the agency of the PHR provider. The two most significant entrants to the
market are GoogleHealth and Microsoft HealthVault. Open source PHRs are also being
developed.
3.6 Evolution of the Web-based PHR and

Health 2.0
3.6.1 As with most emerging technologies there is an
inevitable degree of speculation and ‘hype’ at the
early stages of evolution. We have some advantage
in trying to predict the likely evolution of Health 2.0
based on the current development path of Web 2.0
technologies and services. A useful approach to
assessing the development cycle of an emerging
technology or service is the Gartner Hype Cycle11
The Gartner Hype Cycle
•"Technology Trigger" - The first phase of a Hype Cycle is the "technology trigger" or
3.6.2 A description of the Hype Cycle is show in the breakthrough, product launch or other event that generates significant press and interest
• "Peak of Inflated Expectations" - In the next phase, a frenzy of publicity typically
adjacent figure generates over-enthusiasm and unrealistic expectations. There may be some successful
applications of a technology, but there are typically more failures.
•"Trough of Disillusionment" - Technologies enter the "trough of disillusionment"
because they fail to meet expectations and quickly become unfashionable. Consequently,
the press usually abandons the topic and the technology.
3.6.3 The Gartner Group describe a Hype Cycle •"Slope of Enlightenment" - Although the press may have stopped covering the
technology, some businesses continue through the "slope of enlightenment" and
as: experiment to understand the benefits and practical application of the technology.
•"Plateau of Productivity" - A technology reaches the "plateau of productivity" as the
benefits of it become widely demonstrated and accepted. The technology becomes
increasingly stable and evolves in second and third generations. The final height of the
a graphic representation of the maturity, plateau varies according to whether the technology is broadly applicable or benefits only a
niche market.
adoption and business application of specific Source: Gartner Group
technologies. Since 1995, Gartner has used Hype Cycles to characterize the
over-enthusiasm or "hype" and subsequent disappointment that typically
happens with the introduction of new technologies. Hype Cycles also show how
and when technologies move beyond the hype, offer practical benefits and
become widely accepted
3.6.4 Gartner’s Hype Cycle for Emerging Technologies is shown below with the addition of
our appraisal of the place on Health 2.0 added. Web 2.0 is regarded as approaching
mainstream adoption within the next two years as the market evolves and business begins to
find ways of translating Web 2.0 into sustainable revenue streams. It could be argued that
advanced consumer groups (Digital Natives and Digital Immigrants12 ) are further ahead in
exploitation and finding ways of using Web 2.0 to deliver personal value – in itself a neat
encapsulation of the Web 2.0 consumer led opportunities.
Health 2.0 in state-

funded healthcare
systems
Health 2.0 in market

and insurance based
healthcare systems
11
Gartner Group. The Gartner Hype Cycle http://www.gartner.com/pages/story.php.id.8795.s.8.jsp
12
Prensky, M. (2001). Digital natives, digital immigrants. On the Horizon, 9(5), 1–2.
www.marcprensky.com/writing/Prensky%20-%20Digital%20Natives,%20Digital%20Immigrants%20-%20Part1.pdf

27 October 2008
3.6.5 We have added our own assessment of the position of Health 2.0 on the Gartner 2008
diagram. Our view is that in market and insurance based health systems where healthcare
encounter records may be more widely fragmented there are stronger incentives for the
creation of a web-based Personal Healthcare Record to unite the disparate encounter
information and improve healthcare record portability. In addition insurance based systems
have a more direct incentive to find ways of promoting self-care, peer supported care and
providing more personalised and impactful preventive advice and services through the vehicle
of the Personal Health Record. This leads to the conclusion that Health 2.0 is likely to see
earlier development and penetration in insurance based markets than in state-funded
healthcare markets such as UK.
3.6.6 A useful diagram illustrating the evolution of the PHR is shown below13. Whilst it takes a
US view it is still relevant. NHS HealthSpace is probably at Stage 2a – the Sponsored PHR
although in this case this is state sponsored.
3.6.7 In the UK NHS HealthSpace is the NHS’s answer to the PHR but currently has limited
access to the healthcare encounter record – initially with access only to the Summary Care
Record and with the addition of transactional functionality such as test notification and
appointment booking. It is not yet clear if HealthSpace will break into the full Health 2.0
potential that is being signalled by some of the current entrants to the market or whether it will
permit connection of applications and services developed by the market or prosumers to
provide increased Health 2.0 functionality.
3.6.8 Our view is that uptake of the PHR in the UK will only begin to make significant progress
when there is sufficient added-value functionality to make it attractive to consumers and
individuals. This functionality will need include the ability to deliver content and send data over
a number of different channels in particular mobile web services.
13
Health Industry Insights 2007 from www.idc.com as quoted in by Ken Lopez at North California HiMMS December
2007 http://www.nocalhimss.org/events/presentations/ICW-Presentation.ppt

27 October 2008
3.7 Forward look – Web 3.0 and Health 3.0
3.7.1 One indication of the pace of the development of the web is that a debate is beginning
already about Web 3.0 and what it might become. Much of the discussion currently centres on
the implications of the semantic web. Whilst we are not explicitly covering it in this project we
would recommend that its development is tracked in order to ensure if nothing else that
definitional issues for the specification of research are kept up-to-date.
3.7.2 One guide to the future has been suggested by Professor Andy Marsh. He has
described it as (together with the accompanying diagrams):
Constantly evolving, the web with an emphasis on stronger semantics is moving

into an era of semantic interoperability, or semantic web, as it has been labelled
by some. Composite applications and information/knowledge-intensive
processes share information at both the conceptual model and logical theory
levels. Description logic and first-order logic is being combined with increasing
metadata resulting in increased search capability moving towards reasoning
based services over cloud based platforms.
Original source for diagrams: Project10X’s Semantic Wave 2008 Report: Industry Roadmap to Web 3.0 &Multibillion Dollar Market Opportunities January 2008 Mills
Davis, Managing Director, Project 10X www.project10x.com modified by Professor Andy Marsh HoIP

27 October 2008
4 The perspectives of participants and contributors
4.1 Summary - Still early days for UK participants
4.1.1 This section examines some of the over-arching themes that emerged from the
interviews and workshops.
4.1.2 Many of the NHS and clinical respondents were framing their responses from the
perspective of creating a more effective relationship between clinician/service and the patient
- still an information 'push model' of a relationship which is more web 1.0 than web 2.0. Whilst
personalisation and choice are themes that recur this is still within the context of a marginal
evolution of the current service model rather fully exploiting the potential of the PHR. In effect
the majority of focus was around the uses of the Personal Healthcare Encounter Record
rather than the potential of the wider Personal Health Record.
4.1.3 The fundamental differentiator of web 2.0 is not simply the ability for individuals to
customise their web-based experience but for individuals to be creators and co-creators of
content and value. The power of web 2.0 is to move from the hierarchical to the networked -
creating an enabling infrastructure that allows individuals to create and share.
4.1.4 A significant challenge for the NHS will be the tension between tendency to want to
'define', 'control' and minimise risk to maintain the key relationship between clinician and
patient and the development of a new 'ecosystem' where individuals become responsible for
greater self-care and for generating their own value through networks of peer-groups. As this
changes the clinical role becomes that of 'moderator' (or apomediary).
4.1.5 The state of the debate on the potential of Health 2.0 and the contribution of the PHR is
still relatively under-developed within the NHS. Those debates that are taking place tend to try
and fit Health 2.0 and the PHR into the current service paradigm and might better be
described as Health 1.5. There is a need to ensure that research calls are framed in such a
way as to encourage the widest possible exploration of opportunity and risk in the new
environment as opposed to reinforcing the current models.
4.2 Overview themes from the literature review

4.2.1 The majority of the references were from papers published which viewed the PHR and
its service eco-system directly or indirectly from the commercial perspective – what are the
business opportunities? As many of the references were from the US where health systems
are fragmented, insurance based and thus the business opportunities more obvious this is
perhaps unsurprising.
4.2.2 There were fewer academic references to the PHR and many of those took an explicitly
medical view – in other words they were based on either the current medical paradigms of the
doctor-patient relationship or on the use of the technologies to support doctors improve
communication and knowledge sharing.
4.2.3 The majority of references were from the US. The debate within the UK and Europe is
less advanced.
Research challenge: Commissioning provocative research that is explicitly framed to

challenge centrally driven and medical paradigms – with an increased focus on citizen
perspectives, values and participation.
4.3 Visions for the future

4.3.1 The team asked participants to describe their visions for the future of the PHR. Some of
the comments included:
Removes the parent child relationship - the personal health organiser

Portal for patients with record automatically linked to the information they need, tailored to
them, clinician as moderator not out of the loop

27 October 2008
An extension of the current trends of the intertwining of technology and society with the
consumer opting into sharing based on their perceptions of benefit.
Knowledge as the primary use of the record contributing to patient knowledge and
research knowledge. Data informing discovery, rapid identification of effective treatments,
long term follow-up, identification of unsafe treatments/interventions, risk prediction and
public safety/epidemiology. Reliable unbiased data as rooted in care event record.
The power of social networks, clouds of patient experts; individuals are able to no longer
primarily be defined by their condition but by their primary self-definition and life ambitions
4.3.2 CfH has already undertaken scenario generation activities with HealthSpace and so
articulated some more detailed ambitions:
Appointment reminders, direct feedback on tolerances

Test result notification
Secure communications with clinician
Cross border access supporting travelling patient
Changes relationship with clinician - moves to a more collaborative relationship
Ability to link to other websites such as NHS Choices
4.3.3 As part of the Future Focus workshops run at BERR, participants were asked to
respond to a number of short scenarios (kernels) by developing their own PHR futures in
teams. The outputs from these workshops can be found at Annex A.

27 October 2008
5 The challenge of commissioning and delivering
research in web 2.0 timescales
5.1 Summary – ‘the train has left the station’
5.1.1 A specific issue that began to emerge in our review of the responses and interviews and
our assessment of the literature is the current model for commissioning and delivering
research, in particular timescales. Currently research projects can take up to 3-4 years from
the initial call for proposals to the final delivery of the finished product. In terms of the rapid
evolution of the Internet this sort of timescale is too long for anything other than a
retrospective evaluation for the history books. In the early days of the discussions about the
future of the Web and the applicability of Web 2.0 to Health this might just have been
adequate but as the pace of innovation and exploitation begins to accelerate internationally
research time-cycles must also pick up the pace. Research that is required to inform policy
and practice around the PHR and Health 2.0 needs to be timely if it is to be of use.
5.1.2 There appears to be a tension between the natural desire to maintain rigour and quality
of the finished product, including peer-review – especially important for the Research
Assessment Exercise – and the acknowledged requirement to increase the pace and take
more consequent risks when working in the field of Web 2.0 and Health 2.0. This tension may
be reinforced by the expectations set by research commissioners who are seeking the best
academic quality and value and are uncomfortable with the risks inherent if faster more
adventurous and ‘blue sky’ research.
5.1.3 There are some areas of research within Health 2.0 that are more suited to longer time-
cycles and these are likely to relate to Public Health Research and to Bio-Medical research.
However even these areas will need rapid-cycle research to help inform them how best to
undertake research in this rapidly changing environment and to help inform policy that will
ensure that opportunities for building on the potential for PHR to support research are not lost.
5.1.4 We suggest that there is a need to review the process and pace of the commissioning
cycle and the type of research that is being commissioned and disseminated. We believe
there needs to be an integrated portfolio of research approaches commissioned from a single
point that when combined effectively balances the need for anticipation of and rapid response
to fast evolving trends with the ability to maintain a level of appropriate quality and rigour.
5.1.5 Our suggestion in respect of research into Health 2.0 and PHR is for an unified and
coherent approach to commissioning and delivery of research on three levels:
(a) Commissioning continuous rapid health and non-health market intelligence gathering,
mapping and linking into emerging networks, identifying emergent issues and trends
nationally and internationally and synthesising requirements for more deliberative
short cycle research ‘probes’. We suggest that this should be undertaken by one
provider (possibly an academic/ private research organisation partnership)
(b) Commissioning short cycle (maximum of 6 months including commissioning cycle)

research designed to test and explore the issues and themes emerging from the
market intelligence using network probes (creating a series of participatory discussion
nodes within existing and emergent networks rather than creating separate networks),
predictive markets techniques, simulations, sand-pits and market research techniques
derived from industry. At any one time there may be a number of short-cycle projects
taking place.
(c) longer cycle (up to 18 months including commissioning cycle) forward planning support
– scenario building, anticipating potential developments, translating evidence in other
industries ahead of the curve on Web 2.0 and Web 3.0 to health 2.0 in UK and
modelling responses; longitudinal research tracking new project implementation.

27 October 2008
5.1.6 Research commissioners need to challenge and support universities to deliver research
in much shorter time cycles supported by a more appropriate commissioning and evaluation
approach – possibly encouraging partnerships with private sector research organisations to
support rapid mobilisation for short-cycle research. At the same time commissioners need to
modify their own expectations to fit with the revised model.
Research theme: We suggest that one approach to shortening the commissioning

cycle and yet ensuring that there is a sufficient range of perspectives and expertise to
be brought to the research at each stage would be to tender a framework contract for
Health 2.0 research and select a small group of organisations (possibly academic and
private sector research organisation partnerships) to be part of the framework.
Subsequent commissioning would be simplified and follow normal tender rules for
framework contracts.
5.1.7 Effective and rapid dissemination of the research findings at each level will also be
critical to allow decisions to be informed and the market stimulated. Traditional peer review
requirements cannot be allowed to delay research dissemination. On-line peer review
methodologies may hold part of the answer. Our observation on current dissemination
approaches is that they often fail to reach the ‘front-line’ practitioner and decision-maker in a
timely fashion. Much research remains within the research community and those who are
more actively linked with that community. The good news only leaks out slowly! There are a
number of established networks but these have been created by the academic and research
commissioning communities and some of their industrial partners and as such tend to contain
the ‘usual suspects’.
Research theme: Providers selected to join the Health 2.0 research framework should
be assessed not only on research and mobilisation capability but also on their
approach to rapid dissemination, the evaluation of the success of dissemination and
the assessment of the uptake of research findings.
5.1.8 The networks identified and mapped as part of the market intelligence function should
form key nodes for dissemination. Commissioners should assess how to best use Social
Networking and other Web 2.0 methodologies to get the research into the wider environment
more rapidly and effectively
Research theme: How to accelerate and measure the dissemination and uptake of
research using Social Networking and other Web 2.0 methodologies.
5.2 Respondents’ perspectives

5.2.1 Some of the comments that emerged in regard to this topic area are listed below:
Several months turn around for commissioning then 2 years

Need to maintain rigour and QA
Portfolio approaches - try and get ahead of the curve; more blue sky thinking and
adventurous research.
Adventurous research and therefore not fundable
Lip service paid to blue sky research.
Funders must be prepared to learn from failure experiences – if commissioning fast
research not all will have a successful outcome
How fund rapid turn-around research?
How many people in the academic sector actually think it is a problem?
Own worst enemies; should be more prepared to publish early findings and take risks as
well
Methodological debate - rapid prototyping and speed up R&D process; open source
approach to research and innovation
Draw on knowledge of community - sand-pit and simulation sessions to generate initial
thoughts and develop iteratively along main themes. Less deliberative research more
dynamic and iterative
Lack of definition but sufficient to set themes
What is the new breed of research academics with new rapid methodologies?

27 October 2008
Use wisdom of crowds methodologies?
Still need brownie points in Research Assessment Exercises - depends on publishable
material
Different languages within academic departments - possible higher speed and turn
around with business schools but mainly for policy and strategic areas.
Traditional clinical research paradigm is the RCT which has to show better than current
treatment
Technology as a way of communicating - does not suit RCT frames
Research needs to be driven by different paradigms
But current 'mould' different to break

27 October 2008
6 Policy implications and alignment
6.1 Introduction
6.1.1 Many of the research themes identified elsewhere within the report have policy
implications. As research into this area begins to take shape there will need to be a specific
approach in place to synthesise the results and identify key implications for policy.
6.1.2 This section only looks at those areas where research and contributions as part of the
project have specifically highlighted areas which may need more detailed analysis.
6.1.3 Several organisations and solution providers with commercial interests have been quick
to move into the management of personal health data, while at the same time regulatory
authorities, national health systems and academia have been relatively slow to adapt their
policies and practices to take in to account the emerging market for Personal Health Records
(PHRs).
6.1.4 Developments and initiatives in communications technologies, such as the new high
speed broadband and mobile broadband networks, are making the delivery and
implementation of PHRs easier from a technical standpoint while leaving health systems,
policy makers and regulators to play catch up. In addition, there are a number of initiatives,
such as the introduction of personal heath budgets that will help enable self-directed care and
choice of self-directed services. Self-directed services can provide significant benefits to the
individual and to the various stakeholders
6.1.5 The broad themes that come out from the responses to our research centre around data
protection regulations, issues of digital exclusion and inclusion, disconnect between the cycle
times in industry and policy arenas, and cross-border harmonisation within the EU.
6.2 Data Protection & EU Law

6.2.1 While all European countries have now adopted legislation which protects an
individual’s fundamental right of privacy with respect to their medical information, the legal
approaches vary across the European Union.
6.2.2 The European Union’s Data Protection Directive (also known as Directive 95/46/EC) is
designed to protect the privacy and protection of all personal data collected for or about
citizens of the EU, especially as it relates to processing, using, or exchanging such data. The
Directive is based on the 1980 OECD "Recommendations of the Council Concerning
14
guidelines Governing the Protection of Privacy and Trans-Border Flows of Personal Data."
6.2.3 These recommendations are founded on seven principles, since enshrined in EU

Directive 94/46/EC:
1. Notice: subjects whose data is being collected should be given notice of such
collection.
2. Purpose: data collected should be used only for stated purpose(s) and for no other
purposes.
3. Consent: personal data should not be disclosed or shared with third parties without
consent from its subject(s).
4. Security: once collected, personal data should be kept safe and secure from
potential abuse, theft, or loss.
5. Disclosure: subjects whose personal data is being collected should be informed as
to the party or parties collecting such data.
6. Access: subjects should granted access to their personal data and allowed to correct
any inaccuracies.
14
http://searchsecurity.techtarget.co.uk/sDefinition/0,,sid180_gci1293055,00.html

27 October 2008
7. Accountability: subjects should be able to hold personal data collectors accountable
for adhering to all seven of these principles.
6.3 Setting PHR and Health 2.0 in the wider policy context
6.3.1 A diversified health system brings together a wide range of stakeholders who often have
only a limited understanding of each other’s needs outside their immediate areas of
interaction. In order to broaden stakeholders understanding of PHRs and their potential wider
use we need to raise not only technical understanding, but also to develop a deeper
understanding of the social, legal and ethical issues raised by PHRs.
6.3.2 It is important that PHRs are considered within the wider context of improved health,
wellbeing and social care rather than just healthcare technology issue. The broader context
should also be extended to include lifestyle data, such as the data held by supermarket
groups on consumer shopping behaviour and the link to health and wellbeing.
6.3.3 In order to realise the potential that PHRs promise, policy makers and regulators must
review existing regulatory environments and adapt them as needed to enable frameworks
that address the following:
6.4 Policy research themes

Policy Research theme: DATA PROTECTION: The governance arrangements for
health record data created and used by multiple agencies and users, potentially across
multiple jurisdictions both inside and outside the EU (taking in to consideration existing
UK and EU legislation)?
Policy Research theme: MARKET REGULATION: Creation of a free market for PHR
vendors to participate in, while at the same ensuring that individual users and national
health systems are adequately protected – there is a need for governments to strike a
balance between “protection” and “control”?
Policy Research theme: RESEARCH: The use of health records for research. How
can data from combined EHRs and PHRs be used, with the consent of the data
owners, for clinical research and translational research in the public health arena?
Policy research theme: COLLABORATION: Consistency, transparency and

cooperation across EU countries and other jurisdictions in order to create a harmonised
environment for EHRs and PHRs to be implemented, especially with regard to legal
and compliance issues, and cross-border transactions
6.5 Participant perspectives

6.5.1 As part of the research undertaken for this report, a number of interviews, online
questionnaires and facilitated workshops were conducted. Some of the comments that
emerged from these on the policy context of PHRs include the following:
European Data Protection / other privacy regulation looks like it might prevent PHR
vendors from providing their services to European patients
Equality, equity, allowing diversity are major challenges
Privacy is a relative thing and a moving target; any regulatory framework may have to be
flexible, though interpretation leads to inequality
There will be a very confusing network of parties involved in a person's health record.
Who is responsible for each part? Who is liable for legal compliance?
Who owns the data?

27 October 2008
We must stop thinking of just health -- every health problem is a social problem -- people
don't split themselves into health & social care
This opens the way for private companies in other countries to hold lots of private info. If
they are subject to different laws (e.g. data protection) what rights will patients have?
How can data based discrimination be avoided for users?
Should the PHR be looked at in a global context rather than just UK?
How to ensure government departments or other bodies cannot re-use data without
permission
What role should the Government, NHS and employers play in facilitating this
environment?
Under what conditions can data be deleted (if ever)?
How to access someone's records whose high privacy concerns refuse consent (after
accident, life changing event)
Where will legal liability lie for actions based on the data contained within a PHR (will the
owner of the record be held responsible)?
How to assign someone else as a representative to act on behalf of patient (sometimes)?
The risk of the digital divide - elderly, learning disabled etc.
Cycle times for changing bureaucracies much slower than the technology, so regulation
will lag far behind
Patient budgets as a way of enabling choice and creating opportunity to purchase PHR
systems
The government is always 6 steps behind any new development--how can it get at least
even
If this is to change the way healthcare is delivered what are the knock on effects for the e-
disabled?

27 October 2008
7 Confidentiality, access and trust
7.1 Data protection context
7.1.1 As might be expected given the intensity of recent debates within the UK about data
confidentiality and in particular the consultation conducted by Connecting for Health and the
recent Data Sharing Review15 undertaken by the Information Commissioner, Richard
Thomas, and the Director of the Wellcome Trust, Dr Mark Walport there was a significant
focus on issues of confidentiality, record access and trust within the replies of respondents
and participants as well as within the literature.
7.1.2 It is not the purpose of this report to revisit these debates or question existing policy
however we do highlight some of the issues that arose from our research which will require
further research to inform future policy development.
7.1.3 Without doubt confidentiality is a rate-limiting factor to the development and exploitation
of the PHR. Our experience is that this is particularly the case in state-run systems where the
levels of risk aversion tend to mean that the balance between benefit and risk falls to the
precautionary side.
7.1.4 Current Data Protection regulations are largely focused on the responsibilities of
organisations that hold personal data. With the emergence of ‘Cloud Computing’ and personal
data and information distributed across the ‘Cloud’ probably internationally there is a need to
see regulations updated. We are aware that this is a topic under active consideration both by
the Information Commissioner and within the EU regulatory framework.
7.2 Supporting the user

7.2.1 Within the UK and the HealthSpace PHER context the data controller responsibilities
are clear with the NHS as custodian of the personal data. However as individuals take
advantage of other services to create the more distributed PHR the roles and responsibilities
are less clear. In effect the individual becomes their own data controller. Communicating this
effectively to individuals will be critical (who ever bothers to read the EULA in detail before
installing software?). It is unlikely that written FAQs and on-line leaflets will make much
impact. We believe that if we take examples from other industries that there needs to be live
visual cues within the individuals interactions with their PHR and PHER that provide real-time
alerting to key confidentiality decision points. New approaches are required that set standards
for service providers to deliver not just effective confidentiality mechanisms for their services
but effective support to individuals who are making information sharing decisions. As more
value-added services evolve around the PHR and PHER this requirement will be pressing.
The risk of significant disparity in methodologies that are used to alert individuals to
confidentiality decision points could prove highly counter-productive.
Research theme: Bring confidentiality and privacy alive for individuals – what is best
practice in educating and alerting individuals to confidentiality and privacy issues within
the context of routine interactions with the PHR
7.2.2 Our observation is that creating a layered distinction between the Personal Healthcare
Encounter Record (PHER) and the wider Personal Health Record of which it forms part might
be useful to the debate. We would question how often an individual might want to access their
PHER given the nature of its content that we have already described. We suspect that it
would be once on initial access followed only by access to changes generated by clinical
encounters and even then probably only to the changed elements rather than the whole
record. Even then this would only apply to the most ‘activated’ or ‘activist’ citizens or
15
Data Sharing Review Report 11 July 2008 http://www.justice.gov.uk/reviews/datasharing-intro.htm

27 October 2008
patients16 – mostly those in current treatment pathways. This is covered in more detail in the
section on Users.
7.2.3 Health 2.0 tools are beginning to emerge that act on the underlying encounter data
(including prescribing data) and synthesise data from other sources (socio-demographic data
for example) to provide health dashboards which help track and make sense of the
complexity and impenetrability of the underlying largely coded data. The key issue here is
how willing individuals are to share elements of the synthesised dashboard information (for
instance with carers, family or peer group networks) and what reassurances they need to
provide access to their PHER for the automated tools that deliver personalised dashboard
services.
Research theme: What are the best ways of synthesising and presenting summaries
of underlying data to permit tracking trends in individual health status and well being as
well as presenting advice and information whilst protecting the confidentiality of the
underlying detailed data?
7.2.4 The willingness of individuals to place information on-line is increasing but surveys
would indicate that they are still concerned about confidentiality.
7.2.5 Most of the current confidentiality debate has been driven from the perspective of the
service and the clinician managing the patient, providing effective treatment, preventing harm
and managing confidentiality risks. There is less research on the way citizens and patients
assess the risk/benefit balance in sharing personal information to gain personal value. This
should inform both clinical engagements but also the design of confidentiality and access
methodologies within the PHR
Research theme: How do citizens and patients weigh up the risks and benefits of
sharing personal health and healthcare information? When does benefit outweigh risk?
What sort of information are individuals willing to share for a defined benefit assuming
that the information is shared with a ‘trusted’ service provider?
7.2.6 In our interviews and workshops the topic of family and carer access to key summary
elements of the record (or representations that indicate health and wellness) was highlighted.
It was accepted that few if any carers or family members needed to see the PHER except in
the case of parents of young children. However there was significant perceived benefit in
providing individuals with the ability to share summarised information (perhaps through their
Health Dashboard) with carers and family. ‘How is Mum/Dad doing this week?’ The example
of individuals from cultural backgrounds where family support and care is the norm especially
in old-age was described for us by one respondent. As families find themselves increasingly
distributed nationally and internationally technology that supports improved connection with
the health and well being of a relative could add real benefit.
Research theme: Family and carer access to the PHR – where are the potential
realisable benefits and the accompanying risks and what are the best approaches to
achieving these benefits balancing accessibility, confidentiality and privacy. What sorts
of permission and access models are required to support family and carer access?
7.3 Trust
7.3.1 Five core questions arose from our research in terms of ‘Trust’ when considering the
eco-system of services that might evolve to form the PHR.
(a) From the patient perspective – ‘who do I allow to share or access my detailed or
summarised health data’?
(b) From the patient perspective – ‘who can I trust to add data and information to my
PHR?’
16
The Myth of Health Care Consumerism; Brian Klepper The Health Care Blog,
http://www.thehealthcareblog.com/the_health_care_blog/2008/03/the-myth-of-hea.html#more

27 October 2008
(c) From the patient perspective – ‘am I trusted to add to my own PHR?’ and the clinical
corollary – ‘what trust do I place on the individual’s own contributions to the PHR and
PHER?’
(d) From the patient perspective – ‘who do I trust to provide information, advice and
support?’
(e) Clinical perspective – what trust can a clinician place on third party data and content
that is additional to the NHS PHER in the context of clinical decision making?
7.3.2 A number of examples were highlighted during the interviews and workshops that drew
on the need for better approaches to supporting individuals and clinicians in assessing what
services and advice to trust.
7.3.3 One scenario that was highlighted during the research had to do with the portability of
the PHR and PHER for those citizens either travelling abroad or choosing to spend part of
their retirement overseas. For example large numbers of Britons retire overseas to Spain but
are increasingly returning to this country for end-of-life care. The PHR provides the
opportunity for record portability but it also needs to be updated whilst overseas by Spanish
medical services (and in particular pharmacy records) and then be used by UK clinicians on
the individual’s return.
7.3.4 Another topic was that ‘rare conditions know no boundaries’. In many cases individuals
with rare conditions will seek information and support internationally. Individuals from different
ethnic backgrounds may seek advice and support from peer groups that reflect their ethnicity,
language and religious sensitivities and those peer groups may be predominantly in other
countries.
7.3.5 Health 2.0 is characterised by user-generated content and support – but how does the
individual know what advice and information to trust? Two case studies illustrate the
dimensions of the debate:
7.3.6 Case Study: YouTube as a Source of Information on Immunization: A Content

Analysis17 -
Approximately half of the videos posted were not explicitly supportive of

immunization, and information in negative videos often contradicted the
reference standard. The video ratings and view counts suggest the presence of a
community of YouTube users critical of immunization. Clinicians therefore need
to be aware of Internet video-sharing sites and should be prepared to respond to
patients who obtain their health information from these sources. The potential
use of these sites for effective communication by health professionals should
also be considered.
7.3.7 Case study: An online community for patients with epilepsy; what I’ve learned from e-
patients18 –
‘I have also learned that an online group like the BrainTalk Communities epilepsy
group is not only much smarter than any single patient, but is also smarter, or at
least more comprehensive, than many physicians—even many medical
specialists. While some postings do contain erroneous material, online groups of
patients who share an illness engage in a continuous process of self-correction,
challenging questionable statements and addressing misperceptions as they
occur. And while no single resource, including physicians, should be considered
the last word in medical knowledge, the consensus opinion arrived at by patient
groups is usually quite excellent. And if more expert clinicians offered to consult
17
Keelan et al. YouTube as a source of information on immunization: a content analysis. JAMA. 2007 Dec
5;298(21):2482-4. http://jama.ama-assn.org/cgi/content/full/298/21/2482
18
Hoch D, Ferguson T (2005) What I've Learned from E-Patients. PLoS Med 2(8): e206
http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0020206&ct=1

27 October 2008
informally with the online support groups devoted to their medical specialties—as
I now do—we could help group members make information and opinion shared
in these groups even better’
7.3.8 The second case study also highlights the changing role of the clinician within these
communities – as expert participant and an informed moderator amongst other patient
moderators rather than as the sole fount of wisdom and advice.
7.3.9 The UK HealthSpace and NHS Choices combination may answer some of the base
concerns in relation to trusted information providers but not all.
Research theme: The development of Trust and accreditation frameworks for the PHR
– how do individuals establish ‘trust’ relationships with providers and peer groups and
what are the characteristics of effective Trust relationships?
7.4 The record after death

7.4.1 A number of participants raised the issue of what happens to the PHR of the individual
after death? Who owns the record after you die especially when advances in genetic research
mean that having access to records of parents and other family members may be an
important part of predicting and managing health risks?
7.4.2 Participants were concerned about the confidentiality owed to deceased for instance in
relation to adopted children.
Research Theme: The record after death – implications, opportunities and risks?

Risks of not being able to see that something is not being shared by the patient - and thus
creating risk at point of treatment
Patient will need to give consent to clinician seeing their care records but will they want
clinician to see wider health record?
Gap between ability to use the technology and to understand the confidentiality issues
Contextual sensitivity – issues of timing and relevance
Interpretation of test records if they are uploaded before a professional has seen them
Risk of creating harm to self and others with untrammelled access
When is the individual the Data Controller for their own information?
Implications of outsourcing storage to third parties and cloud computing
People do not understand the sophistication of marketing which may seem very intrusive
and to be using very personal records but which is just clever at profiling from limited
data.
What is personal data – is an IP address personal data. What is anonymous?
Jurisdiction issues – EU Directive implemented in different ways
Enforcement v Regulation
Who owns data after you die – what confidentiality is owed to the deceased?
The need for a patient centric model of data confidentiality.

27 October 2008
8 The user/consumer perspective
8.1 Who are the potential users of PHR and how will they use it?
8.1.1 There is very little current published research into the potential uptake of PHRs within
the UK and just who are the groups most likely to use a PHR and when within their life
journey. In the US recent research19 published by the Markle Foundation Connecting for
Health project (no relation!) provided the following headline findings:
(a) High perception of value: Regardless of their interest in using an online PHR service,
79 percent or more of the public believe using an online PHR would provide major
benefits to individuals in managing their health and health care services.
(b) High interest: Almost half of the public (46.5 percent) say they would be interested in
using an online PHR service. This represents about 106 million adults.
(c) Privacy concerns: Among those saying they are not interested, 56.8 percent cited
worries about privacy and confidentiality as a reason for their reluctance.
(d) Practices matter: By majorities ranging from 87 percent to 92 percent, the public feels
that provision of six privacy, record-access, and user remedies would be either
“essential” or a significant factor in their decisions whether to join an online PHR
service. More than 90 percent said their express agreement should be required for
each use of their information.
(e) Utilization of electronic PHRs remains low: Only 2.7 percent of adults have an
electronic PHR today (representing about 6.1 million persons). Most (57.3 percent) do
not keep any form of personal health records, and 40 percent keep some paper health
records.
(f) Variations by sponsor: Interest in using a PHR online service varies according to the
PHR service’s sponsoring organization, with the health care services individuals now
use or have available locally rating most highly
(g) Variety of enforcement: When asked about enforcement of privacy policies, more
than 75 percent of the respondents considered each of the following to be useful:
market forces, new federal health privacy law, action by the Federal Trade
Commission and state attorneys general, and independent organizational-compliance
audits.
8.1.2 There is no equivalent published study within the UK to provide a foundation on which to
better understand the potential user groups and user motivation to engage with a PHR.
Research theme: Who are the potential users of the PHR, what aspects of the PHR
are they most likely to find of value, what channels would they find of most use to
access and supply information, what are the barriers to adoption and what would
‘activate’ more UK citizens and patients to use the PHR?
8.1.3 A recent blog-post entitled ‘The Ultimate Guide to Google Health: 60+ Tips and
Resources’20 is amongst a number that would indicate that there is a leading edge community
of PHR users who, fulfilling classic Web 2.0 trends, are beginning to act as the innovators of
the new uses of the PHR and testers of the new PHR functionality as it emerges.
19
Connecting for Health Markle Foundation – Americans Overwhelmingly Believe Electronic Personal Health
Records Could improve their Health June 2008 http://www.connectingforhealth.org/resources/ResearchBrief-
200806.pdf
20
‘The Ultimate Guide to Google Health: 60+ Tips and Resources http://www.nursingdegree.net/blog/14/the-ultimate-
guide-to-google-health-60-tips-and-resources

27 October 2008
Research theme: Identify the current leading edge of PHR and social networking
users in the UK and develop co-research methodologies to learn from early experience.
8.2 Social Networking in Health 2.0

8.2.1 The European social-networking community stood at 127.3 million unique visitors in
August 2007 - reaching 56% of the European online population, according to a comScore
report into the online habits of the
UK’s social networking community.
Among the findings:
8.2.2 UK social-networking usage

was the highest in Europe, with 24.9
million unique visitors - 78% of the
total UK online population -
participating.
8.2.3 Usage of social-networking sites

in the UK was heavier than the
European average in terms of hours
spent, pages viewed, and the number
of visits per month:
8.2.4 The average visitor to social

networking sites in the UK spent 5.8
hours per month on those sites in
August and made 23.3 visits.
8.2.5 That was a significantly heavier

usage than in France, which averaged
2 hours per month and 16.8 visits per
visitor. Usage in Germany averaged
3.1 hours per month and 13.8 visits
per visitor.
8.2.6 With the above research as background to UK usage of social networking it has been
suggested that an important potential benefit of social networking technologies within Health
2.0 is the ability of individuals to affiliate to multiple peer groups by self-defined interests. This
ability to personalise their health relationships permits patients to form networks that may well
not fit with traditional health service designations – individuals are able to create primary
definitions of themselves not by their condition but by their lifestyle choices and stages.
8.2.7 The NHS Faculty for Health Informatics has also recently oublished a useful overview of
Social Networking and its relevance to the NHS21.
Research theme: The impact of social networking and peer-support groups in health
and healthcare on the ability of individuals to achieve improved self-defined health
outcomes.
8.2.8 A growing number of mobile phone subscribers worldwide are taking online social
networking to the streets, accessing social networks over the mobile internet, according to
22
research from Nielsen Mobile . The UK leads Europe with 812,000 - or 1.7% of UK mobile
subscribers - who visited social networking websites on their mobile phones per month in the
first quarter of 2008. That is twice as much as other major European markets’
21
The power and the perils of using social networking tools in the NHS; NHS Faculty of Health Informatics.
http://www.slideshare.net/rowanpurdy/the-power-and-perils-of-using-social-networking-tools-in-the-nhs-presentation/
22
www.neilsenmobile.com

27 October 2008
Research theme: What are the most effective channels/methodologies for influencing
individual behaviour within the PHR context and how do they vary with different groups
of users?
8.2.9 Previous sections have addressed issues of Trust and described two case studies in
relation to health information on the web. There is a major growth in the development of sites
where self-regulation, peer review and peer moderation leavened by informed clinical support
is resulting in well regulated services and sites which provide trusted information spaces for
individuals. Statistics are only available for the US which shows that the rate of growth of
visits to health information sites in the 12 months to July 2008 was 21%23. Top networks
include Revolution Health and Everyday Health.
8.2.10 A good example of a rapidly growing arrival is the US site Organized Wisdom24 which
combines trusted doctor-reviewed content with user-generated content. In effect clinicians
and ‘expert guides’ create kernels of information described as ’wisdom cards’ around which
users can cluster and contribute as part of peer support networks.
8.2.11 NHS Choices25 is also developing trusted content and a wide range of tools but has
not yet graduated to the stage of enabling peer user groups although this functionality is
planned and it has a number of blog contributors in specific disease areas.
Research theme: The effectiveness of peer regulation on content and usability. The
role of expert moderator and methodologies to respond rapidly to inaccurate
information spreading through networks.
Research theme: Current usage of health information sites by UK residents

8.2.12 An emerging theme in Web 2.0 is the use of predictive markets. This builds on the
work of James Surowiecki in his book Wisdom of Crowds26. In the US prediction markets are
used to forecast influenza and predictive market to predict Avian Flu has also been
launched27.
Research theme: The use and value of prediction markets in healthcare research
8.3 Disability and accessibility of the PHR

8.3.1 We are grateful to Dr Howard Leicester Head of R&D at the Faculty of Health
Informatics at the Royal College of Surgeons of Edinburgh who is disabled himself and who
chairs CACHE (Collaboration for Accessibility and Communications in Health and Education)
for the following section.
8.3.2 There are currently an estimated 15.4 million people in England with long term
28
conditions (LTCS) with and average of "33.2%" of all PCT populations, and "around 830,000
29
disabled people in Scotland" . These are very basic estimates as "There are no current
30
nationally-agreed NHS code-sets for disability" at least in England .
8.3.3 Though focused on the major killers/Government priorities via QOF, and self reports in
national health surveys, it is not clear how figures break down by disability types. Prevalence
23
comScore; Online Health Information Category Grows At Rate Four Times Faster Than Total Internet September
2008 http://www.comscore.com/press/release.asp?press=2436
24
Organized Wisdom http://organizedwisdom.com/Home
25
NHS Choices www.nhs.uk
26
Surowiecki, James (2004). The Wisdom of Crowds: Why the Many Are Smarter Than the Few and How Collective
Wisdom Shapes Business, Economies, Societies and Nations Little, Brown ISBN 0-316-86173-1:
27
Press Release: Influenza Prediction Market to Help Strengthen Early Warning System for U.S. Bird Flu Outbreak
http://www.fiercebiotech.com/node/5867
28
Department of Health, (2008). Raising the Profile of Long Term Conditions Care: A Compendium of Information,
January 2008.
29
George Street Research, (2008). Accessible Information within Local Authorities and Health Boards, A summary
report on on behalf of the Scottish Accessible Information Forum (SAIF - associated with the Scottish Consumer
Council).
30
Department of Health, (2008). Health Informatics Review: Equality Impact Assessment

27 October 2008
estimates for various degrees of sight loss and their combination with other problems, for
example, remain insufficient for service planning and the subject of continuing research 31 But
we do know that LTCs/disability is a major predictor of healthcare use, and that age is a major
predictor of LTCs/disability.
8.3.4 We also know that older people and the disabled "are among the slowest groups to
adopt new technologies" and may be in need of special monitoring and help 32. The special
agency for disability in education (JISC/TechDis33) describe some of the 'assistive
technologies' commonly used (screen-magnifiers and readers, switching systems) but they
are expensive, often difficult to use, while the list does not stretch to those with severe
hearing or speech problems. Moreover, trends towards web 2.0 in healthcare34 are currently
without supporting accessibility standards as noted by the only conference in the field hosted
by AbilityNet35.
8.3.5 So there seems to be a contradiction developing as electronic health systems advance.

Those who most need and use healthcare are the ones most limited by costs and
accessibility issues and the ones with the least reliable information on ICT needs. In fact, this
is a problem extending to prescriptions and equipment manuals in inappropriate formats and
even to lack of skills in face-to-face communications for those with particularly 'special needs'.
8.3.6 That is why the CACHE initiative was launched, in Scotland where a national disability
data standard for eRecords is developing36, and why it is happy to provide further input
Research theme: Providing access to PHR and Health 2.0 related services for those
with a disability

From passive to active participant
From paternalistic medicine to participatory medicine
Active choices - the empowered patient. Informed, engaged, enabled and in the driving
seat
Improved compliance, concordance, fewer DNAs
Speedier access to information and advice – synthesised intelligence and support.
Does the definition of outcome begin to change - user defined outcomes become more
prominent rather than clinically defined outcomes?
Supports self segmentation – ability to self-define/self-segment and find and link to others
within the segment. No longer primary definition based on health status or condition
User as innovator at the leading edge.
31
Vision Research News, Summer 2008, joint publication by Pocklington Trust, RNIB, Guide Dogs for the Blind
Association, and the WHO initiative UK branch Vision2020UK
32
Department of Trade and Industry, (2005. UK Digital Strategy
33
http://www.techdis.ac.uk
34
. NHS Health Informatics Forum, (2008). Social networking tools in the NHS - Final report. Derived from workshop
in May 2008
35
http://www.abilitynet.org.uk/accessibility2/podcasts.html
36
http://www.datadictionaryadmin.scot.nhs.uk/isddd/29572.html

27 October 2008
9 The service perspective
9.1 Challenges and opportunities for clinicians
9.1.1 Participants in interviews and workshops consistently highlighted the potential impact of
the PHR and Health 2.0 on current models of care and on current patterns of relationships
between clinicians and patients. Sir Muir Gray in his platform talks at recent conferences
describes Professions/Clinicians as being two decades out of step with the pace and
implication of technology..
The third revolution is different - everyone’s involved and it’s everywhere, it’s
adaptable, it’s pervasive, it’s inclusive and convergent.............. The third
industrial (and therefore, healthcare) revolution is driven by citizens, IT and
knowledge. Professionals are by and large two decades off the zeitgeist and this
is not restricted to healthcare, it’s seen across all professions.
In the past we’ve given knowledge to clinicians who’ve then passed it on to
patients, now our principles are that we give knowledge to patients and give
them the opportunity to discuss it with clinicians. What is the best structure for
financing and organising healthcare in 21C? - it doesn’t matter - you just have to
decide how much to spend, how to allocate it and maximise use of resources.
We should be thinking systems rather than structures, recognising the network
that runs alongside every bureaucracy is responsible for innovation’. Sir Muir
Gray
9.1.2 However the reach and impact of the disruptive clinical innovator is massively
expanded. Whereas pre-internet the disruptive clinical innovator was safely geographically
constrained the web gives substantially greater potential impact.
Research theme: The impact of Web 2.0 on the reach of the disruptive clinical
innovator.
9.1.3 A number of participants highlighted the fast moving nature of the development of
Health 2.0 and speculated that the development of the fully fledged PHR with its portability
would require organisations to be more agile and responsive, give specialist providers with
condition specific expertise much wider reach and touch the role of all clinicians most of
whom are already experiencing patients arriving at clinics well armed with information
gathered from the Internet. The arrival of sites allowing patients to rate their experience with
named doctors (www.iwantgreatcare.org) adds further pressures to clinicians.
Research theme: The impact of the PHR and Health 2.0 on the role of clinicians – how
to make the transition effectively.
9.1.4 Dr Amir Hannan in his interview with the team described his views of the impact of the
PHR on patients based on his own experiences with providing web-based access to the GP
health record37. The key points he made about the potential impact on the GP:
GPs are snowed under by the mundane and the normal but worried about missing the
key exception
If patients who are happy to do so take close charge of own care then that releases GP
time for other patients
GP can review patient progress remotely
Allows GP to focus on the 20% that cannot/will not use the technology
Require clinical systems to monitor exceptions - compliance/concordance for example
Collects prescription but prescription not dispensed
Patient records own blood-pressure - check concordance
Ensure blood pressure is within target agreed with patient
37
http://www.htmc.co.uk/pages/pv.asp?p=htmc101

27 October 2008
Use technology to support refocusing of GP towards the hard to reach groups or who
have had a poor deal from NHS. Allows them more time to spend with this group -
including those in nursing homes and with severe conditions
Use technology to support lower need groups - can share information more widely -
talking to a community rather than 1:1, support individuals interacting and supporting
each other, technology enabling exception reporting and safety information
(contraindications).
Research theme: the impact of the PHR and Health 2.0 on current care processes –
benefits and challenges
9.1.5 But as Dr Hannan readily admits he is the exception rather than the rule
9.1.6 The project also highlighted the growth in scale and importance of social networking for
clinicians (www.doctors.net.uk being one long lasting example). Many of these sites provide
reach and access to networks and communities allowing clinicians use social networking tools
to share information and seek advice and support. Many of the younger clinicians now
emerging from training are themselves ‘Digital Natives’ and provide challenges to longer
established colleagues as they are more familiar with Web 2.0 principals and practice. Some
participants noted the risk of these communities being closed and self-perpetuating however
others thought it provided a useful space for doctors as an entry point for participating in and
exploiting social networks developed by patients for patients.
Research theme: the use of Web 2.0 to support continuing professional development
and the uptake of evidence – current practice and opportunities.
9.2 Service impacts and benefits - the asymmetrical challenge of PHR

and Health 2.0
9.2.1 Our research has highlighted the contrast between current bureaucratic models of
service organisation and the potential emergent models based around the PHR. The real
predictive challenge is whether the emergence of the PHR and Health 2.0 will remain no more
than peripheral in terms of adoption and thus have little impact on current services or whether
a combination of the expansion over time of the ‘Digital Native’ as a proportion of healthcare
users, ‘tipping point killer apps’ and innovative service providers will provide sufficient
disruptive impact and clear benefits to act as a catalyst to a significant change in the way
services are delivered. We believe that the issue is more likely to be ‘when’ rather than ‘if’.
9.2.2 Health 2.0 presents an asymmetric information challenge to the NHS - how does the
monolith react to small, transiently powerful social networks and peer groups, to flurries of
YouTube videos, 'sousveillance' activities, networking sites such as patientopinion.org or
iwantgreatcare.org. The effectiveness and impact of these groups will be considerably
enhanced by access to technologies that allow health and healthcare records to act as
sources for value-added activities, acting as catalysts for connectivity (connecting people like
me) and allowing individuals to no longer be defined as patients first and foremost but as
parents, business men, golfers, students, divers, climbers and only then by their condition.
9.2.3 At the same time participants saw benefits in early stage PHR implementation and
these included:
Authoritative single point of information (HealthSpace)

Demystification for patients - better communications and less room for misunderstanding
Slicker and more convenient - all records required for a clinic
Cash releasing benefits
Reminder system reduces DNAs
Discharge letters and tests results electronically transferred
Greater visibility of choice
Community-based services are more likely to grasp these because they help solve some
of the problems of coordinating care in diverse locations in the community - using the
patient as the fulcrum of care coordination, instead of trying to get different service
providers to share information effectively and safely (On-line questionnaire response)

27 October 2008
Research theme: Modelling the potential impact of different levels of uptake of PHR
and Health 2.0 services on current patterns of service provision – benefits and
challenges.
9.3 Implications for Public Health

9.3.1 We found it more complex to engage with the Public Health community for this study.
We were lucky enough to be able to get input from Sir Muir Gray whose clear exposition of
the challenge has already been quoted in this report. However our research indicates that the
majority of the debate around the role of the PHR and Web 2.0 has been focused in the US.
The main topics are either the use of Web 2.0 technologies to support internal knowledge
sharing or the opportunities to use PHR and Health 2.0 as the means for Infectious Disease
Surveillance.
9.3.2 There are some indications of the Public Health Community beginning to work on using
Web 2.0 technologies to support efforts to change health and lifestyle behaviours – in
particular the use of text messaging. We would strongly recommend looking at the
presentation materials from the Texting for Health conference held at Stanford University
earlier in 2008.38
9.3.3 Other discussions we have been party to including the ICMCC Panel debate have
illustrated opportunities for using PHR accumulated data as rich source of health and socio-
economic information to support health promotion and lifestyle research and targeted advice
and support. The use of Social Marketing techniques in conjunction with Health 2.0
technologies and the PHR offer significant promise for reaching key groups including children.
The use of viral marketing across a range of Web and mobile channels by industry illustrates
the possibilities for influencing health related behaviours.
9.3.4 Our view is that whilst there may be isolated pockets of thinking about the use of PHR
and Health 2.0 in relation to Public Health the topic is still at its early stages of development
and is a fruitful area for early research in order to help shape future Public Health policy and
practice.
Research theme: Public Health, Health 2.0 and the PHR – opportunities and priorities
for engagement. Focusing on both surveillance and public health intelligence and on
targeted public health campaigns using the PHR intelligence, Social Marketing over
Web 2.0 channels
9.4 Implications for researchers

9.4.1 There was considerable interest from some of our participants in the opportunities that
the PHR in particular might present to bio-medical research. These included:
A rich source of longitudinal data and information to support research, in particular the
ability to link socio-economic and health data around individuals;
Direct access to PHR owners to invite them to participate in research either as individuals
or by releasing access to their data;
The ability to create linkages at person level between PHR and other specialist data sets
such as Cancer Registries or genetic data repositories.
The use of social-networking techniques to engage patients as co-researchers rather
than simply as research subjects
9.4.2 The Research themes that emerge from these ambitions are:
Research theme: Development of standard PHR tools to support the anonymisation of

data and that allow the individual to release access to researchers with confidence –
described as the ‘Research Window’ on the PHR.
38
http://www.texting4health.org/page2/page2.html

27 October 2008
Research theme: How best to inform and engage patients in making informed
decisions about participation in research through the PHR portals
Research theme: Linking external data repositories to the PHR. Security,

confidentiality and consent.
Research theme: The use of social networking and predictive markets techniques to
engage patients and individuals as co-researchers
9.5 Health Across boundaries - health tourism

9.5.1 A consistent theme that emerged from a number of our interactions was the service
impact of the recent EU ruling on cross border healthcare and the role of the PHR in
facilitating ‘Health Tourism’. The issue was ‘bi-directional’ in that contributors speculated that
there would be greater uptake of PHRs amongst those going outside the UK for treatment
and that those entering the UK for treatment would bring with them their own PHRs which
they would expect UK clinicians to be able to use and also update. We do not expect this to
be a significant issue in the short or medium term. We have already highlighted the issues
around ‘Trust’ relating to non-NHS clinicians contributing to the PHR and its implications for
the way patients receive treatment in this country and overseas. Given the current EU
research in this area we do not suggest that there any current priority research themes within
this area which would usefully add to the pool of knowledge.

27 October 2008
10 Technology perspectives
10.1 Introduction
10.1.1 It was not the core purpose of this project to delve too deeply into the technology
underlying the PHR and Health 2.0. However a number of technology issues were raised by
participants in the research which we think are useful to highlight as potential topics for further
research and are specifically relevant to the PHR.
10.2 Contextual search, Artificial Intelligence and Agents.

10.2.1 The growing volumes of data, the distributed nature of the data and the different data
formats implies that extracting useful meaning from the data is becoming harder than ever.
For the patient, extracting useful meaning from the current healthcare encounter record is
complex and requires a degree of medical literacy that few except the most expert patients
possess. As we have discussed in other sections we would question how often most patients
would want to look at their detailed record – except when they are notified of changes to their
data such as the addition of test results for example
10.2.2 As the record accumulates both health encounter data and additional information
provided or linked in by the PHR user the volumes will grow exponentially and will require
highly sophisticated processing to support meaningful interpretation and to reduce complexity.
The risk is that the PHR becomes ‘choked’ with data and loses its usefulness as its
complexity increases.
10.2.3 . Our research (within the health and non-health technology arenas) indicates that
there is growing interest in the development of ‘Intelligent’ automated systems that derive
contextual meaning from the core healthcare encounter record, are capable of combining this
with other information that the individual patient makes available through the PHR and then
uses this to deliver risk profiling, connections to relevant peer networks, information and
signposting to services and specialist advice as well as simple synthesised summaries of the
analysis to the patient.
10.2.4 These technologies are already emergent in a number of areas – Google Adsense
which is linked to contextual search is one generic advertising example. In the Personal
Information Security area Garlik39 provides personal profiling and risk assessment to identify
risk relating to identity theft. In healthcare Isabel Healthcare40 is a UK based company
originally spun out of a charitable project at St Mary’s NHS Trust which is pioneering the use
of Meaning Based Computing for diagnostic support for clinicians – the technology has the
potential to extend to the PHR and provide support to both clinicians and patients. The use of
these technologies is becoming widespread within industry and in particular those areas
which combine very large amounts of structured and unstructured data. However uptake
within the health sector has been limited mainly due to concerns about clinical risk and
reliability.
10.2.5 We would suggest that the time has come to focus research much more urgently on
this area. The ability to generate significant added value for individuals from the mass of
accumulated PHR data will be critical as well as supporting clinicians and researchers in their
use of the data.
Research theme. Deriving sense and meaning from PHR data and information for
individuals, clinicians and researchers – the application of computational methods to
analysing, synthesising and presenting information and knowledge
10.3 Access and security technologies

10.3.1 A number of respondents discussed the need to balance the requirement for securing
the data, maintaining its confidentiality and the individual’s privacy and at the same time
39
https://www.garlik.com/
40
http://www.isabel.org.uk/home/default

27 October 2008
ensuring the access controls are proportionate. At least two experienced respondents were
concerned that if access controls were too onerous that this would limit uptake and use of the
PHR. Analogies were drawn with the Banking industry experience with on-line banking.
10.3.2 It has been suggested that there is a need to examine more closely the impact on PHR
uptake and usage of the different access control methods for PHR users. In addition, linked to
the previous section what access controls are required to permit individuals to give access to
automated systems as opposed to other individuals such as clinicians.
Research theme. The impact of different models of access control on PHR uptake and
usage
10.4 Mobile Web 2.0 and its impact on Health 2.0 and PHR
10.4.1 Building on the near ubiquity of the mobile phone there has been a rapid growth of
mobile phones that are capable of access the internet as well as being used for the traditional
functions of speech and text. Health applications for mobile devices are expanding rapidly
with uses ranging from acting as interfaces for diagnostic devices to providing personalised
access to health information and text based health alerts. Current trends indicate rapid growth
in mobile social networking and user generated content via mobile devices, mobile search
and mobile instant messaging
10.4.2 The pace of technology development and exploitation to support Web 2.0 in a number
of industry sectors together with the availability of free or cheap on-line platforms will continue
to drive growth.
10.4.3 Given the ubiquity of this channel we believe it would be prudent to undertake more
specific research to understand the opportunities that the web-enabled mobile phones
presents to connect the individual with their PHR and in particular the ability to deliver timely
information and advice to users.
Research theme: How mobile Web 2.0 will translate into mobile Health 2.0 – in
particular how users are likely to want to use their devices to access PHR information
and the most effective methods for realising the potential of mobile web 2.0.

27 October 2008
11 The industry perspective
11.1 Introduction
11.1.1 The Personal Health Record (PHR) market and Health 2.0 in general has evolved
significantly in the last 2-3 years, and consumer awareness and usage has increased also.
The current PHR offerings are just the latest in what is still an evolving market.
11.1.2 A number of initiatives currently underway will help to create an environment that is
ready and able (at least from a technical standpoint) to support the emerging PHR and
Health2.0 market, for example:
Upgrading of the UK broadband infrastructure (e.g. BT’s 21st Century Network et al)
Introduction of high-speed mobile networks
Switchover to digital TV and IPTV
11.1.3 However, the question is whether technology is ahead of the market and to what
extent is the market ready? Is there a clear business case and supporting business models
for the widespread take-up of PHRs? What lessons can we learn from other industries?
11.1.4 It is likely that the research themes that emerge within this section will be more
relevant to research commissioning by Department for Business, Enterprise and Regulatory
Reform (DBERR) than DH. Conversely a significant number of the themes identified in other
sections of this report will be relevant to industry.
11.2 Market Readiness

11.2.1 The health and wellbeing industry is going through significant IT enabled change,
especially in the area of Electronic Health Records (EHRs) and Personal Health records
(PHRs). These changes, along with the shift towards a citizen centred approach will have a
significant effect on the health information landscape and will lead to a much more
competitive marketplace for health and wellbeing services.
11.2.2 Looking at the wider healthcare industry we can see that a number of players have
entered this market in the last 2 years providing personal health records, personal health
applications and personal health platforms, for example:
Technology companies
(Microsoft, Google, ICW etc.)
Insurance companies
Employers and employer
consortia (e.g. Dossia)
Health providers (both public and
private)
11.2.3 In addition to the existing

players a number of other
organisations that have potential
channels to market and appropriate
commercial drivers are likely to enter
the market on their own or in
collaboration, such as the mobile
phone operators, data analytics and
consumer marketing organisations,

27 October 2008
social networks, supermarkets etc. Personal Health Records will stimulate a competitive
market with all key stakeholders having identifiable benefits, as illustrated in the diagram to
the right41.
11.2.4 It is still early days when it comes to consumer awareness of PHRs and the arguments
for and against them, but awareness is rising through direct campaigns and through social
networks. The main distribution mechanisms for PHRs are likely to be through “trusted”
sources such as the NHS (Healthspace), employers, health insurers and also direct to the
end-user via a number of B2C channels.
11.3 What can we learn from other industries?

11.3.1 Several other industries have been transformed and been made more competitive
through the use of information technology, and the healthcare industry is poised for just such
a transformation. The healthcare industry is not entirely unique with regard to its data
management needs, and there are useful lessons that can be learned from other industries,
most notably the financial services industry and also the airline industry, which both move
huge volumes of data on a daily basis.
11.3.2 Quite apart from the policy and regulatory frameworks that exist for these industries,
the industries themselves have established effective standards for interoperability and data
security, e.g. the Society for the Worldwide Interbank Financial Telecommunication (SWIFT).
SWIFT focuses on the promotion and development of standardised global interactivity for
financial transactions, and provides a global communications link for data processing and a
common language for international financial transactions. A similar mechanism to provide
secure healthcare messaging services for PHRs (and other health data) is likely to emerge
that encompasses agreed standards and provides the potential for true interoperability.
Research theme: What interoperability standards are available and are required to
support the interchange of structured and unstructured health information between
different PHRs and EMRs?
Research theme: What standards are required to support the description of health
information to support health related search and effective linkage with PHRs – and
what are the implications of the development of the semantic web?
11.4 Emerging Business Opportunities and Models

11.4.1 The emerging PHR applications and platforms aim to have sustainable business
models, but at present these business models have not yet crystallised and most are under
review. A variety of models exist ranging from several “free” ones to subscription based,
including:
Subscription based, where the end-user pays a fee

Provided “free” to the end-user, but paid for by the provider (e.g. insurance company or
employer)
Provided “free” to the end-user, but paid for through advertising and revenues derived
from channel and commercial partners
Provided “free” to the end-user, provided that the end-user agrees to varying degrees of
information sharing (e.g. for research and profiling)
11.4.2 Within the UK the development of a market in added-value services around the PHR
may well depend on the approach of NHS HealthSpace to encouraging the development of a
vibrant eco-system of providers in order to create a true NHS PHR providing users with a
wide range of choices and added-value functionality. A centrally controlled and driven
approach is unlikely to support the development of such an eco-system.
41
Health Industry Insights 2007 from www.idc.com as quoted in by Ken Lopez at North California HiMMS December
2007 http://www.nocalhimss.org/events/presentations/ICW-Presentation.ppt

27 October 2008
11.4.3 A large market for third party application providers will be created who will design new
applications and devices that interface directly to PHRs; each of these developers will have
their own business models and many will be SMEs. In addition, new entrants (such as the
supermarket chains and gyms) will start to provide alternative primary care facilities directly to
consumers, and these will either supplement or compete with existing facilities depending on
your viewpoint.
11.4.4 The opportunity to monetise personal health data is significant for both consumers and
for the organisations that collect and store that data. However, as consumers are likely to be
sensitive to receiving targeted commercial content (because their data has been “shared”),
users must be given the option of not sharing their health information.
11.4.5 There are significant benefits to the research community in accessing the rich pool of
health data that will be created, and significant commercial opportunities in providing that
data. However, as the companies providing PHRs are, in many cases, not covered by existing
regulations (e.g. outside of HIPAA in the USA), there arise several questions on how the
benefits to the research community can be realised while at the same time protecting
consumer privacy and choice. Unless this issue is resolved it will remain a barrier to realising
the research, public health and commercial benefits that the opportunity presents.
11.4.6 Traditional measures of return on investment (ROI) may not, on their own, be
adequate for measuring the value of the emerging PHR market, and better models may be
created by looking at social return on investment (SROI) that also encompasses non-financial
benefits such as improved health outcomes and public health improvements.
Research theme: What are the UK market opportunities for the provision of value-
added Health 2.0 services to extend the functionality and user attractiveness of the
PHR.
Research theme: What is the current position of innovation and business development
in the UK Health 2.0 market? How can innovation and start-up businesses best be
supported?
11.5 Participant Perspectives

11.5.1 A number of challenges that need to be addressed by the industry were identified by
participants.
No universally accepted definition for a PHR, compounded further by a range of

acronyms, e.g. PHR, PCHR, EMR, EHR, EPR etc.
No single standard for interoperability between different systems may result in vendor
lock-in and lack of take-up through fragmentation of the market.
The business case and models for PHRs are not yet clear, but the one thing that seems
to be emerging is that it has to be a low or no-cost model for the end-user.
The disruptive effects of new technologies and approaches will create innovative new
healthcare players, and hopefully benefit the consumer.

27 October 2008
Annexe A - Future Focus Workshop Kernels and
Reports
Web-based Personal Health Record

Workshop 2nd September 2008
User case study ‘kernels’ for scenario building:
Kernel 1
Sarah is 55. She is an accountant, a partner in a small regional accountancy firm in the South
West and living in a terrace house in Bath. Divorced with three children aged 19, 16 and 12
she balances a busy practice with family life and her love of travel. She has travelled with her
children to most parts of the world and has plans to go to Vietnam this summer and to Arizona
at the beginning of next year. She is an avid user of Trip-Advisor to help plan her travels and
uses a number of different networks to seek travel advice from people like herself. Her 12
year old daughter has a food allergy (milk and eggs). Sarah herself recently had surgery to
remove a melanoma and has just finished a course of chemotherapy. Her 19 year old son is
worried about his mother travelling so soon after treatment. He has just discovered an on-line
health record service which he thinks might be a good way to ensure his mother’s and sister’s
records are available wherever they travel.
Kernel 2
Nana is 23. Her parents are Pakistani immigrants to the UK and they live in Leeds where
Nana was born and brought up. She lives with her parents in the council house they bought in
the 1980s. She works for a small but flourishing import business in Leeds which brings in
local craft products from a small number of villages around the area from where her parents
were born in Pakistan. Most of the sales are made over the internet from customers in the UK
and Europe and Nana runs the internet sales process. Her father has advanced coronary
heart disease and her mother is suffering from the onset of Type 2 diabetes. Nana is
determined to avoid these conditions, goes to the gym four times a week and has discovered
mountain biking. She wears a heart rate monitor from which she downloads the data to her
PC to help her monitor her fitness. She has a Facebook profile and uses it to keep in touch
with friends, family and has just started looking for people like her who are interested in
mountain biking.
Kernel 3
Ken is 70. He is an ex-miner and as a consequence has some chest problems not helped by
the fact that he still smokes 20 a day. He lives near Dover in Kent in a council house and
worked in the East Kent coalfields until they closed down. After that he had a steady business
as a painter and decorator. His wife, Janet recently had a hip replacement operation which
has worked well for her. Their son lives and works in Glasgow. Their daughter married and
emigrated to Australia – they use email to keep in touch and Ken has just been on an ‘Access
course’ for the over 70’s at the local library with a couple of friends where they have learnt
more about the Internet and Ken discovered Skype which means he can talk to and see his
grandchildren in Australia. His son has bought him a laptop for Christmas and their daughter
has offered to pay for a return air fare so they can visit their grandchildren in Perth. They are
both registered with a GP practice that uses EMIS and so they can if they want access their
GP records over the internet.
Perspectives to consider in developing the scenarios:
The individual Public Health

Family/carers Industry
Health Services Regulators
Health professionals Who else?

27 October 2008
27 October 2008
Web Based Public Health Records – Scoping Workshop 6 August 2008
1. Brainstorming: What are the key barriers to implementation?
Category 1: Benefits and Value
1. Needs to be of use to patients and other users

2. Identifying the real user
3. Patient Benefit
4. Too much data already do we want to generate more? Can we meet demand response?
5. Benchmarking what other countries are doing in this space
6. Do we understand the risk/benefit calculation an individual makes and how is it different
from the clinical calculation?
7. The willingness of patients to aggregate their personal data
8. As a user I would want the PHR and Web2/3 mechanisms to support my health needs
when and where I need
9. Access mechanisms for users need to be pervasive, simple and affordable (free?)
10. Opportunities for bi-directionality - getting messages to people
11. Mission creep - large databases are inherently at risk
12. I can belong to multiple communities at any one time?
13. Lack of shared definition and objectives for healthcare.
14. Revenue model for infrastructure deployment = what is the business case for government
or private sector to invest
15. Measurement and metrics? How can we evaluate outcomes?
16. Identifying benefits to all stakeholders
17. What incentives are there for patients?
18. The ultimate endpoint is better access to care services
Category 2: Regulatory standards
1. If a Spanish clinician is contributing to my record how do we know what standards they are
using?
2. Confidentiality
3. Interaction with the Data Protection Directive
4. What happens to my record after I die - do my children get a CD to put the urn on?
5. Clinician fear of breaching patient confidentiality.
6. Need European standards on format of data inputted and used
7. Never mind the EU what about sharing within the home countries
8. Information standards = country European World Wide
9. Lack of clarity in aspects of law and practice, e.g. children's access to and control of
records, carer access.
10. Danger of the dead hand of bureaucracy stifling development and thus creating incentives
for insurgent alternatives
11. Doing it for England and ignoring the rest of the UK's cross border information issues
12. Governance
13. Regulatory framework for preventing "commercial abuse" of data, possible learning from
the financial services industries
14. What is current EU thinking on this subject?
15. How does this fit with the desire of the Data Sharing Review to make all patient records
available for research?
16. Portability given new EU ruling on cross border health
17. The possibilities with data mining
Category 3: Systems and structures
1. How permanent is the data - and the uses "value added" applications make of it i.e. if I
withdraw my diagnosis of DM do I still get sent advice?
2. Traditional organisational perspectives not suitable for web 2.0 environment

27 October 2008
3. Which data model will be prevalent, centralised or distributed?
4. Organisational complexity
5. Need to include social services and housing - joint working
6. Bad relationship between 'the centre' and the local NHS.
7. In-boxes getting crammed with junk mail from Microsoft and Google's partners
8. Disjointed competing parts of the NHS not appreciating that the web based PHR can be the
glue for patients
9. The technology will continue to evolve and what works now may not in the future
10. Network resilience
11. Current confidentiality and privacy models are organisationally focussed and less suited
for a person focussed and generated record
12. Heterogeneous market of SCR providers - more than one SCR
13. Need to have a portfolio of solutions - one size does not fit all
14. British characteristic of concentrating on why things won't work initially rather than how to
make them work.
15. Are there data storage issues?
Category 4: Privacy
1. Ability of Patient to own their record = relates back to privacy and trust
2. Privacy
3. Privacy concerns, especially with regard to negative profiling
4. Access for carers?
5. Familial issues - can the records be linked as families?
6. The technology will continue to evolve and what works now may not in the future
7. Current confidentiality and privacy models are organisationally focused and less suited for
a person focused and generated record
8. Is the "background" gathering of personal health related data ethical, or should it only be on
an explicit opt-in basis
9. Segmentation of records with selective disclosure
10. Where is my record actually stored - jurisdiction within the 'cloud'?
11. Public health access?
Category 5: Trust
1. Provenance of information - trust in the source providing trust to use

2. Patient Trust
3. Trust
4. Trust in the provider and data holder
5. Reliability and accountability of information
6. Daily Mail paranoia - Sharing personal Information is a risk to individuals not a benefit
7. Mission creep - large databases are inherently at risk
8. How do I know as a consumer that what I keep in my record or add to it is reliable, useful
and not unsafe? What are my responsibilities and do I understand them?
9. Where is my record actually stored - jurisdiction within the 'cloud'?
10. Trust issues within the NHS, especially between primary and secondary care.
Category 6: Paternalism
1. Historic under-valuing and under-use of patients and information in the NHS.

2. Paternalism and de-skilling of the patient leading to lack of confidence in their ability to take
control of their healthcare.
3. Ignorance by commissioners about the high level of health and IT literacy
4. View that all patients have to be included and will want to engage
5. Digital divide
6. Overcomplicating what's actually involved in bringing this to life
7. Failure to ask 'patients' what they are trying to achieve; clinicians assuming they know and
can speak for patients.
8. Patients not having the confidence to speak for themselves.
9. Lack of passion and enthusiasm from Health Practitioners

27 October 2008
Category 7: Commercialism
1. Broad industry engagement and awareness of opportunity

2. Financial interests of those running the service
3. Do we want to transform the NHS into a US model?
4. What is the business case? Who is going to make money from this and do we want them
to?
5. How the resources offered to patients will be linked i.e. snake oil on the net
6. Revenue model for infrastructure deployment = what is the business case for government
or private sector to invest
7. What incentives are there for patients?
8. The market for engaging the "worried well" is huge but falls outside of the traditional health
systems
Category 8: Purpose
1. Consumer/patient take up - what incentivises users?

2. The worried well!
3. Government’s belief that it can help
4. Genetic information - how long before we have option to store our genetic profile online?
Implications?
5. Is this for self-care and information, or to replace existing medical records? If the latter, how
does funding work?
6. Business case for range of partners to delivery
7. Widening the scope of the project too far so that we never get started
8. Primarily want to be defined by who I am, not labelled as a patient
Category 9: Accountability
1. Who is accountable if personal data is used inappropriately?

2. Healthcare without boundaries - what are implications of individuals seeking web-based
services from other parts of the world?
3. Fear of standard of record-keeping and standard of decision-making becoming more
transparent to patients and colleagues.
4. Lack of Risk taking by policy leaders
5. Clinician fear of breaching patient confidentiality.
6. The degree to which clinical decisions are based on a wing and a prayer and to document
leaves open for litigation
Category 10: Relationships
1. Obtaining the authentic voice of the real user

2. Patient awareness and engagement
3. New clinical roles within the new environment. Clinician as moderator
4. Changing the patient/clinician paradigm
5. Implications for patient - clinician relationship
6. Implications for clinicians of the change of relationship, new experience of power sharing.
Category 11: Education and training
1. Over caution about patient's ability to understand and deal with the potential breaking of
bad news over the web
2. Lack of clinician trust in patients to behave like grown ups, fear they will all become
hypochondriacs!
3. What sort of training will be needed for both health care professionals and administrative
staff like doctor receptionists?
4. Not making use of the great enthusiasts and pragmatists in this field
5. Forgetting about some of the existing research in this area e.g. Demos - the Talking Cure

27 October 2008
Category 12: Control
1. Decentralised model is only way of doing this

2. Will the clinicians let go?
3. How does this fit with the desire of the Data Sharing Review to make all patient records
available for research?
4. The possibilities with data mining
Category 13: Confidence
1. Media focus on simple stories, preferably involving bad news.

2. Competing PHRs e.g. Google, Health Vault, HealthSpace leading to cynicism or overload
3. If used in non-English speaking scenarios, how is information translated and made
accessible?
4. This isn't a question of keeping information secret - it is a question of being able to evaluate
the robustness and accuracy and completeness of the information on which clinician and
patient have to make decisions: medical data is essentially fuzzy!
Category 14: Security
1. Person/user authentication
2. Security
3. More laptops being left on trains
4. Regulatory framework for preventing "commercial abuse" of data, possible learning from
the financial services industries
Category 15: Inclusion
1. Digital inclusion and exclusion
2. Syndicate Group Working:
2.1 Kernel 2: Nana (see also Annex 1 and 2)
More about Nana:
A digital native, she was brought up in that environment and finds it easy to use.
In 2013, she is the family health manager (carer).
She is motivated, taking control of the environment.
There are strong cultural links to Pakistan and a wider family in Pakistan.
She is a high achiever.
She is interested in monitoring and evaluating her own health, driven by family risk
factors.
She wants to interact with the healthcare system in a different way:
She’s making choices for herself, kids, family and parents
Even though she’s away from her parents, she is still the health manager.
By 2013, she will have started a family:
She will be interested in her children’s health
She will not be living at home any more, so helping to manage her parents’ health is more
of a challenge: she has access to part of their data (monitoring) which enables her to
monitor the base data – alerts and exception reports (by then she will also have the
prescription history).
She will still be keeping fit, but not as intensively.
She has arranged to hand–off some of the carer tasks to service providers, who provide
direct advice from, for example, Karachi General Hospital (culturally sensitive and in their
own language) and alerts to the GP of the care centre.
With her extended family, she is guiding them to put their records on Google and other
service providers.

27 October 2008
There is a measles epidemic, which causes her to worry about her children: what’s
available in terms of public health surveillance and monitoring? Each child has their own
record, enabling Nana to get advice back on their general health issues and seeks to plug
into social networks that can provide advice. Is the child’s record portable?
Nana doesn’t like HealthSpace, so has gone to a more flexible provider. Trusted brands
like Boots, Lloyd’s Pharmacy also contribute data, for example prescription records; she
also feeds in her personal monitoring devices to build up a longitudinal record, giving
updates to her PDA on her own health.
The NHS is one of a range of trusted providers of care records: clearly this has
implications for the NHS as we know it today. In Nana’s case, she gets a range of value
added services, for example, new information on diabetes; child obesity (and she has
choice). She has her own health record; she has agreed to give her genetic profile to the
Wellcome Foundation to aid research. Her clinician has access to her NHS data and
some core data.
Other issues:
How do clinicians gain access to non-NHS data? Does the NHS have access to her non
HealthSpace provider data? How do healthcare professionals get to see her information?
What are the implications for people’s choices for their own care?
Social care data is needed
How do people navigate the environment? Organisations that provide simplify the system
will be the ones that win commercially.
2.2 Kernel 3: Ken
Summary of current situation:
Ken: enjoys life, he’s not getting worse, wants to keep in contact with the family, he’s up
for new challenges and is increasing his IT literacy as he can see a benefit of keeping in
touch with his dispersed family
Janet: not IT literate but might use interactive TV, want to keep in contact with the family
and wants to keep Ken well
Son: Lives in Glasgow, doesn’t really want to be a carer, has a busy career
Daughter: can’t be the carer, is worried about putting her brother in the position of carer
but still wants to do her bit
Bottom line: Ken is fairly relaxed and does not want to give up smoking. They all want to
preserve the status quo and maintain it through a crisis, therefore the approach is to work
on the family rather than Ken himself, and get Ken to give them permission
In 2013:
Five years on, Ken is 75. He can access his record and gets information on his health
regularly. He can see his vulnerability and has joined a network of similar people on a
stop smoking programme. His chest pain is slightly worse, but he has an interactive care
plan which is moving him gently in the direction of self monitoring – blood ox, peak flows
etc. – overseen by a specialist nurse who automatically monitors things like his
appointments, calendar and medication.
More information is obtained and shared with the family, which helps them feel they are
doing something useful. The children can access their parents’ records via Emis (parents
have given their permission) and keep track of their health. They are included as carers
on a single assessment and can see the care plan and follow its progress.
Rather than just providing data, the PHR is useful in helping interpret what the data
means (map of medicine, general care pathways) and what might be done as a result.
Feedback may still be delivered by the family, Ken may start to pick up the information
himself and be reassured in real time. The data also gets to the registry nurse, but the

27 October 2008
infrastructure is quite complicated to get it all working. The system is based on trust but
someone else has to help you.
Clinician support is provided via predictive software, personalised to Ken, which makes it
graphic where he will be if he does nothing, a little or a lot.
Carer Support
Prevention Identification Self Extensive

Management mgt + self
Mgt
Carer Support
Ken has a budget to buy services as he sees fit. He assembles his team with urging from
his family.
Other Issues:
If there is a capital cost (for patients), how is this paid for? Do we establish personal
budgets? Can we build on what we’ve got already, for example the community alarm
service? The principle would be to build on what we have got, but the infrastructure has to
have the services to back it up and make it work.
3. Discussion:
Both scenarios depict a world where the families are dispersed and we work all over the
world, but we want to get back to the older model of being together.
An option is to do nothing. The assumption is that these developments are desirable for the
end-customer. People will need to be convinced of the advantages to them and the benefits;
or the ability to opt-in or opt-out.
There is much diversity around what people are likely to want and what they will use. How
much will this change over time (but maybe the guilt won’t).
Who will maintain the information (websites etc) and how will it be funded?
And why? What will the commercial model be? (which will be needed if it is set up within the
NHS).
Is the question who is best placed to provide real value and what is it that people want in
terms of healthcare?
A Public Health record is perhaps different from a Public Medical record in terms of their use,
purpose and infrastructure support.

27 October 2008
Does the “internet” record enable the changes and reduce the barriers?
What do we do with the groups who get left behind, e.g. the elderly and people who don’t
have the equipment?
Could Microsoft work with, say, HealthSpace, and develop something that could be sold-on to
other parts of the world that might improve their system and delivery? It would be great to
have a top-flight model that would really work for all. (Is this consumer or Government driven?
Does the market force out the best product ultimately via competition. Standards aid inter-
operability).
The UK GP record seems to be unique. What implications does this have for a more general
record keeping need?
Can data transfer be tested or researched to assess the inter-operability of the information
rather than the system? (Note the context is important here – example given: the different
definitions of ‘DNR’ according to sector and profession).
Does broader access by, for example, carers to people’s records improve the accuracy of the
data?
Policy derived evidence: How far is the project looking for the policy to be developed vs.
building on what we already have?
What is the hypothesis that the research is designed to test? Where is the value in the health
system that we have and how do web-based records help, if at all? What’s the threshold for
engagement for various people and groups?
Should the NHS concentrate on people who may be about to develop a condition, rather than
the young, fit 20’s (worried well), i.e. it’s available to all but “pushed at” those who might need
it most? However, it is this age group (the young) who already do everything on the web. This
changes the power structure and relationships and therefore where is the resistance among
clinicians? Generally where there is a benefit that also simplifies things, these initiatives get
adopted.
What about the bigger, wireless connected society and the implications for data management
and protection? Will this enable this (ideally)?
There is a degree of inevitability in all this – therefore how can it be made more positive and
improve things for people?
What about those who are broadly, are not unwell, and whose contact with the medical
profession is infrequent? GP’s input to this group is critical in generating their response (and
in making themselves attractive to this group). How do we engage the profession to be
positive about the PHR – or at least don’t slow it down?
Are we over complicating this? Many GP’s are already supportive. How best do we capture
and build on this?
The complexity of choices we seem to generate is simplified when we understand what the
customer wants for each of their familial relationships and responsibilities.
It will happen. The PHR won’t be NHS provided. Microsoft would like to aid the coalescing
process by providing standards and a technology platform.
So how does the NHS, as a UK service provider, embrace this and participate to the benefit
of the customer in a multiple provider environment? It is difficult to get the information out to
all parties and maybe the only person who can is the individual themselves. Does the PHR

27 October 2008
become a record of medical intervention / contact? Can the individual determine the use and
access that others have to their information?
Do we really need cradle to grave medical records (or at least should we determine what it is
that is most useful (compared, say to Germany or Scandinavia etc.) and what’s to say that the
record is assumed complete when in fact it isn’t!!
Is healthcare affordable in the long term as we currently know it, and is this project a
worthwhile opportunity for improvement over that time? Does it help predict risk factors? To
what extent is building a longitudinal record useful in improving care; reducing costs;
improving advice to individuals (because in 5 – 10 years time our knowledge will have
improved to be able to deliver this). To what extent do people want to pass on their records to
their kids, as it represents their genetic inheritance (or does this generate more worry)? How
do we balance the benefit, value and risk?
Smoking and alcohol are the big public health cost drivers. How do we influence the youth to
engage with this and increase health advice that is cool?
Is PHR a way to improve health advice - especially to the young?
How do we get consensus on some of these issues, especially when the economic case is so
unclear?

27 October 2008
Annex 1: “Nana’s World”

27 October 2008
Annex 2: “Nana’s System”

27 October 2008
Annex 3: Key Issues Summary
What is the economic case for the promotion of a web 3.0 based PHR across
England?
Shouldn’t we have started from the consumer’s viewpoint first?
Can local solutions be scaled up?
------------------------------------------
Who’ll want a PHR, who’ll need it, who’ll love it, who’ll fear it, who’ll use it?
How can the PHR be customised to meet individual patient / user needs?
How much competition is helpful in the PHR world? When does it become wasteful
and confusing?
------------------------------------------
What is the purpose of a PMR? Is it a place for an individual to store information?

Health support for this information? A record for the use of healthcare professionals?
Who benefits? A) the user? B) the health economy (better health, lower costs)? C)
providers?
These two need to be answered to get buy-in from users – individuals and professionals
Are we discussing PHR’s or opportunities arising from Web 2.0 and other developing
technology?
------------------------------------------
Given consumers are embracing Web 2.0 / PHR’s how can Government / NHS /
Clinicians engage / embrace to drive improvements in outcomes and contain
increasing costs for healthcare?
What is the value / benefit to: Government; NHS; Patients for embracing web 2.0
PHR’s?
What is the role of Government / NHS / Commercial Sector in delivering PHR

information / regulatory environment etc?
------------------------------------------
What is the economic case for a Web 2.0 PHR?
Shouldn’t we have started form the consumer’s viewpoint?
Can local solutions be scaled up?
------------------------------------------
Digital inclusion
Innovation
Definitions: PHR Users

27 October 2008
------------------------------------------
What are the benefit / value propositions for the various stakeholders?
What is a PHR and how will it be integrated with existing medical records /
mechanisms?
How do you resolve data privacy / ownership issues etc?
How do you engage end-users in the research?
------------------------------------------
How do you get buy-in from the patient, healthcare professionals and the Government?

27 October 2008
Web Based Public Health Records – Scoping Workshop 2
2 September 2008
1. Brainstorming: What are the key barriers to implementation?
Category 1: Regulation and standards
1. Who will drive the open standards required for this health ecosystem to be effective?
2. European Data Protection / other privacy regulation looks like it might prevent PHR
vendors from providing their services to European patients
3. Equality, equity, allowing diversity are major challenges
4. Privacy is a relative thing and a moving target; any regulatory framework may have to be
flexible, though interpretation leads to inequality
5. Standard/s for health record PHR...Interoperability
6. There will be a very confusing network of parties involved in a person's health record. Who
is responsible for each part? Who is liable for legal compliance?
7. Who owns the data?
8. We must stop thinking of just health -- every health problem is a social problem -- people
don't split themselves into health & social care
9. This opens the way for private companies in other countries to hold lots of private info. If
they are subject to different laws (e.g. data protection) what rights will patients have?
10. How can data based discrimination be avoided for users?
11. What about enforced access to patient records? Father wishes to know if daughter is on
the pill; potential employee 'asked' to check record in presence of the employer
12. Should the PHR be looked at in a global context rather than just UK?
13. How to ensure government departments or other bodies can not re-use data without
permission
14. What role should the Government, NHS and employers play in facilitating this
environment?
Category 2: Information Assurance / Management
1. Continuity of access across life’s mishaps & accidents

2. Should clinician input be separate (separable) from patient input?
3. Under what conditions can data be deleted (if ever)?
4. Security risks are rarely apparent until they become a reality. The potential for patient
detriment is quite large here.
5. How to access someone's records whose high privacy concerns refuse consent (after
accident, life changing event)
6. User generated health content is likely to be random and incomplete, so how can the data
be "cleaned" and utilised effectively
7. Where will legal liability lie for actions based on the data contained within a PHR (will the
owner of the record be held responsible)?
8. How to assign someone else as a representative to act on behalf of patient (sometimes)?
Category 3: Culture
1. Consumer behaviour - formal and informal

2. Are consumers/patients/users ready for the PHR, and what information do they require in
order to make an informed choice?
3. Could trust in the health profession/NHS be eroded by the introduction of third parties into
the relationship?
4. The switch from paternalism to partnership
5. We can ascertain attitudes towards privacy now (though people don't always means what
they say), but how can we influence future attitudes?
6. Aligning the very different goals, preferences and biases of the many stakeholders

27 October 2008
The system is supposed to benefit the patient, but most business models involve
someone other than the patient paying. That distorts the system to serving the payer
rather than the patient.
7. The risk of the digital divide - elderly, learning disabled etc.
8. Ensuring the spectrum of privacy feelings are accommodated (paranoia to apathy)
Category 4: Health Service Organisation
1. Organisational inertia - existing NHS structures not sufficiently agile to respond to

disruption
2. NHS Trusts cannot buy innovative services because they are outside of the NPfIT / CfH
framework
3. Cycle times for changing bureaucracies much slower than the technology, so regulation will
lag far behind
4. What is the training requirement for health professionals so that they understand the full
potential and implications of the PHR?
5. What role should the Government, NHS and employers play in facilitating this
environment?
Category 5: Disruptive potential
1. Will health professionals accept this 'invasion' into their sphere of expertise by patients and
private companies?
2. How to manage the transition from now to how things will be in the future
3. The PHR will probably be the ONLY way to have a comprehensive record
4. Computer-based technology likely to be superseded by mobile telephony - how quickly will
the computer-based way of working (largely of professionals) move to fit the mobile paradigm
(more common amongst patients)?
5. Where will you be when the revolution comes? :)
Category 6: Commercial drivers / business case

1. Viable commercial models for the deployment of PHR systems and services
2. What is the business case for the PHR in the public sector and what is the case in the
private sector
3. Private companies will have shareholder/reputational concerns that may make them wary
4. Patient budgets as a way of enabling choice and creating opportunity to purchase PHR
systems
5. Who pays for the storage & management of the data?
Category 7: Patient
1. Changing patient expectation

2. Patient expectations - do they know what they are letting themselves in for
3. How to support people at both ends of the continuum of technical ability and everyone in
between
4. Patient's fears about losing control over access to their data
Category 8: Future Scanning / imagining
1. Anticipate in the realm of imagination, what the healthcare "world" will look like when users
have the technology and demand a new way of providing care
2. Once the genie is out of the bottle it is very difficult to put it back
3. The government is always 6 steps behind any new development--how can it get at least
even
Category 9: Provider
1. Doctor patient relationship

The switch from paternalism to partnership

27 October 2008
2. Professional attitudes not necessarily accepting of patient-centred healthcare
Technology
1. Will existing record systems be made interoperable?
Social Exclusion
1. If this is to change the way healthcare is delivered what are the knock on effects for the e-
unabled?
2. Syndicate Groups: Scenario Development - 2013
Group 1: Sarah:
Sarah has unfortunately recently died as a result of a relapse. She had been investigated the
year before based on her electronic patient record (no PHR) and left no living will for her
relatives.
Her son, now 24, is concerned for his health as a result: does he have the same risks, some
genetic risk? He gets some information from his father and gets his father’s permission to
access Sarah’s record, but he finds it very difficult to get any information (Sarah had a full
genetic map, but withheld access – she forgot).
However, in trying to research his risk, he discovers there are PHRs on the web, some of
which offer services, for example, to find out your family’s “health tree”, using intelligent
agents (while the PHR is free, the add-on services are paid-for). This has motivated him to
become the “Chief Medical Officer” for the family – he’s arranged for all of them to have
PHR’s and has contacted their father to link his PHR to the family’s.
The other children all use social networking sites extensively, which has enabled them to find
their relatives and create a family health history, which has contributed to their collective
mental wellbeing. Another service they have found is travel advice for those with food
allergies, rather like the old trip-advisor – this service advises hotels and restaurants at your
destination(s) for you. There are lots of paid-for services around the PHR that are of interest
to the siblings, and they all give the youngest support via social networks.
(There is an outstanding issue that the group were unable to resolve regarding whether
EPR’s will be able or technically willing to link into PHR’s)
Group 1: Ken:
Ken is now 75 years old and crippled, on oxygen therapy. His wife is also in failing health and
disabled, and is not able to be an effective carer for Ken. The don’t travel very much as a
result, but depend on Skype and the web, as they are big users of tele-health data and put all
the information on to their PHR’s for the kids (and others, for example, health coaches,
nurses and other providers to determine if an interventional visit is needed) as they depend
on a network of friends social services and the family. Their medical information goes from
EMIS to their PHRs (for example, spirometer and pedometer information), but not in the
reverse direction. Third parties can have access to the data: analytic services and predictive
modelling could be tied-in. They access a shared calendar via interactive digital TV to arrange
appointments and their servies are delivered via a combination of interactive TV, mobile
phone and pc. The interactive TV service also provides social networking and other support,
for example, to talk to other patients.
Ken uses smart clothing with built-in sensors monitoring his data (blood pressure, respiration
etc) – so there are revenue models being developed (clothing, analytic services).
Uncertainties:

27 October 2008
Commercial side: analytics is the big one to generate sales
Collaborative commercial models – will people support this ecosystem? Who will be allowed
to own, and thus, monetize this data?
How much of a disruptive commercial opportunity is there in computing and acting on this
data?
The services around the record highlighted by group 2 should be a by-product; a means to a
greater end – what happens as a result? What is the right level of disclosure?
There is also a question around whether these Digital TV interactive services will be
encouraged and how much the infrastructure will support this.
Group 2: Sarah:
Sarah is on a terminal trajectory although she is still living. Her son will inherit the key
decision-making responsibility and works within the NHS to help make things better for their
family life. The youngest daughter may need social support, she’s now 17 – and at home
doing her A levels. The middle daughter is in South America (Brazil) with VSO – there are
new treatments coming out of South America (as she has the means and opportunity to
travel) enabling the pursuit of all possible therapies: the PHR is a means of collating all the
information and a source to seek other systems and information via all means. It gives
people like Sarah the means to ‘source’ care.
There are issues with the transferability of the PHR from the UK to other systems and also
issues of trust: is this consistent? The user-generated side of PHR and the associated
governance issues are very challenging – who has jurisdiction in a system of multi-
jurisdictional liability in case something goes wrong or when patients need to complain?
Another core issue is how is all the information collated given all the travelling? If no-one
trusts each other in the UK / US, how do you avoid duplication and yet get accurate
translation of the information? Sarah trusts the information she has, but may not trust
repeats and may resist things being added to her PHR.
Group 2: Nana:
Nana is now 28 and healthy; her father is deceased and her mother is stable. She uses PHR
and is obsessive about her health data and risks – she is a tele-health abuser, generating a
huge amount of health data, physical measures and DNA about herself in all situations
(including the gym).
She shares the summaries with others via Facebook communities. This runs great risk of
privacy breaches and being taken advantage of, especially via third parties making use of the
information. This sharing of information, without understanding the consequences, could lead
to adversarial relationships with GP’s (for example, around NHS choices and information
available).

27 October 2008
3. Group Discussion: Issues Raised
Services provided by third parties should be driven by patient needs; they choose the
services they want to acquire and drive their development. The value proposition of
the service will therefore drive its acceptance and demand.
What are the implications for a joined-up service vs. “`a la carte” selection on an
individual basis? Is there a danger that the NHS will prevent others accessing the ‘full’
PHR (HealthSpace) while allowing a summary version? Will GP’s still be the ‘way-in’
to the NHS? Will other providers or organisations come in that replace GP’s -
including organisations like Tesco or Boots responding to PCT tenders for services
(i.e. consortia other than GP’s – as we are already seeing).
So where does the central record lie? As the personal side builds up and the NHS
‘holds on’ until it can’t hold back any further, resulting again in a ‘unified’ system of
healthcare. Will it still be part of a social contract that delivers healthcare via taxes? If
so, perhaps it matters less what it looks like so long as you don’t need to pay to
access it.
The whole service is being transformed even now – PHR’s may accelerate this. (On
the basis it drives add-on and analytical services, especially for the worried well).
What are the degrees of freedom in the market:

Vendor locking
NHS provides everything and manages the system (how far do we let it go – in either
direction)
What about portability and transferability on PHR data from one service provider to
another?
Third party providers will be driven by what makes money, rather than what patients
want. Will this be an area for regulation to ensure portability as a principle? (Microsoft
and Google may be locked-out of the UK as an example, but other organisations
could come in and behave in a similar way: does the patient or the organisation own
the data?).
Who is the data controller (i.e. determines the way and the uses the data is put to)
when the information is uploaded (say by me) to a platform? What does the platform
do to the data and who do they sell it to? The consumer or patient uploading the data
does not absolve the operator of the platform from behaving irresponsibly (fair-
processing principle).
What about health data being used in a way similar to credit profiling? Resulting in
predictions being made around health leading to discrimination on insurance. Is
consent needed form patients? What about the PHR being inaccurate (or worse,
fraud).
What about ‘enforced access’ (e.g. with HealthSpace), where the patient has the
control of the record but is pressured by a third party to access the record or provide
information to another?
What about being forced to give access to health records as part of say, applying for
a loan or insurance before it has been quoted?
In Germany, some insurers mandate access to PHR / health records as a condition of

continuing cover. Nuffield and similar organisations already have some of the data
anyway – we need to lift the lid and see just what is there so a dialogue can be had
with the organisations and policy agreed (or regulation determined). Does
Government have to legislate on some aspects of privacy information to protect the

27 October 2008
people, minimise the data and avoid the worst of the excesses? (There does seem to
be a need for a degree of minimising the damage people / patients can unwittingly
do).
Technology goes in leaps and bounds while regulation struggles to keep pace (glacial
rate). Therefore, should principles rather than rules be established? (similar to FSA
and data protection). However, it should be recognised that even this still poses
difficulties in practice.
Could the privacy breach risk be measured (for consideration for research): how do
we mitigate the access to records, based on breach risk, so we can allow / deny
access by protecting against the ultimate harm?
Facilitator: Nick Naylor

E: nick.naylor@futureplan.co.uk
M: 07986-023722

27 October 2008
Annex 1: Sarah

27 October 2008
Annex 2: Ken

27 October 2008
Annex 3: Key Issues Summary
How do you ensure a free market for PHR vendors to participate in?
Are there any unreasonable laws that apply to PHR vendors that should be updates?
For the reasonable laws, what resources are there to help the vendors understand
the laws and to comply with them?
How to manage the governance arrangements for data used by multiple agencies /
actions?
Patient / Consumer awareness of this area: how to ensure people really understand
what they are getting themselves into
Platform and application providers asserting ‘ownership of data’ is very problematic
Various ontologies / data structures will be used in PHR – how are these to be
squared?
PHR’s will empower patients. How will the balance of power shift between users and
healthcare professionals?
Use of PHR data by third parties – how regulated?
Policy: Government’s balance between “protection” and “control”
Research: What are the possible uses / consequences / developments in future,

based on human behaviour (personal and business). How to prepare?
Policy: Ownership and responsibility of data / information
Investigate patient behaviour and cultural expectations
Create transparent debate on state / private sector health records
Explore value proposition (services) transaction for health records
Data ownership, portability, choice always existing to ensure “consent” remains

meaningful and ethical (prior, informed and understood, freely given, specific)
Muliti-jurisdictional responsibility upon clinical error
Assessment of privacy breach risk for all means consent access to PHR
What business models are viable in the context of the NHS?
What cultural and behavioural changes will be needed to accommodate PHR?
What functions and services are enabled by PHR and how can they integrate with
NHS provision?

27 October 2008
27 October 2008
Annexe B - Online questionnaire responses
11.5.2 What is the relevance of Web-based PHR to your area?
Started an open source PHR company.

Web-based PHR would be a turning point for more effective, preventive and promotional
health care.
It would activate consumers’ self-help and awareness of own health and healthy lifestyle.
Supporting patients in NHS services who want to carry on control their own records.
Our research group is focused on finding and defining methods and models allow finding
optimal solutions (or close) for Health Care Problems. Using Web allows the final users
(patients and doctors) to access to these solvers in a simple way (with a user-friendly
interface).
important policy issues concerning quality, safety, patient control
Web-based PHR is part of the evolution of healthcare to true patient direct care. This will
not evolve around technology both around a conversation between people online and
offline.
11.5.3 Paint a picture of what you think it could look like if the full potential of Web-
based PHR was realised
A patient can know as much about his or her illness as their doctor does.
Some patients -- proactive/active - could be the key coordinator of their own care
The patient is the most disruptive innovation in healthcare! Fully engaged in their health,
patients become 'auditors of one', checking quality, and knitting healthcare together in
patient-controlled seamless care
Patients will be autonomous.
Consumers would be empowered and more aware of what works for their own health.
Knowing results of own treatment and lifestyle they would also be more active in own
health care and health promotion. When making a follow-up of own condition, contextual
to environment, diet, motion or medical treatment, consumers would make for continuum
of own health care and welfare.
Consumers´ role would be strengthened related to health care and their relationship with
professionals improved. Professionals would work more for supporting consumers in own
health care and empowering their self-care when possible.
Often a solution in the Health Care needs the data knowledge (actual or/and historical
ones) related to the patients. For example, about the glucose monitoring in the blood of a
diabetic patient they are necessary for having an optimal daily diet. Then the Web-based
PHR can play a relevant role because it could give the instruments to communicate the
data to the different solvers of specific problems and the final results to the users.
11.5.4 What difference would this make to consumers and patients?
A switch from paternalistic medicine to participatory medicine.

There would be transformational changes for consumers related to their own health
promotion and health care. Consumers´ role would change to more responsibility and
their perception of state of health would be improved. The most transition would be
related to their awareness of own health, health promotion and outcome of healthy
lifestyle. By being more aware of own health, they would be more active and responsible
for self-help and deserve better relationship with professionals.
It would mean that these patients could take greater control of their care, and have to talk
to/walk to less services to get health care they need.
For our approaches, the word “user” means consumer and/or patient indistinctly . It could
be a difference among doctor and patient because the latter is who needs the service, the
former is who plays a fundamental role in monitoring and verifying the final results given
by the automatic solver.

27 October 2008
My personal opinion that this would give simple easy used tools that would improve the
doctor patient communication and also would give easy knowledge access for
information.
Accountability and cooperation. More interest and control over a patients own healing
process is a positive development which comes at the prices of increased accountability
and information load.
11.5.5 What would the new services look like and what are the implications to current
health providers?
Doctors who work with patients win. Doctors who work on patients lose.
Web-based PHR could be a tool of propaganda for a healthy lifestyle of all people. By
weaving in pleasure, both motivational and inspirational, consumers would be activated
for using the tool regularly. Web-based PHR would contain promotional series for
components as motivation, diet, self-examination or inspection of own body. Series with
professional support would also be for all health problems relevant for self-care with
follow-up of professionals. Examples of such series are for diseases as diabetes, high
blood pressure, heart and lung diseases and cancer. The objective is to let the technique
work for more efficient health care and successful outcome of wellbeing.
Services would have to be more flexible, enabling those proactive patients to take greater
control and supporting that, but also having systems to support people who did not want
to take more control.
Our service will be towards patients and doctors. In particular they will support medical
decisions (diagnosis, prognosis and therapy). They will assist the doctors (with historical
data, learning and forecasting instruments) and the patients (allowing them to interact
with the doctors, for example, directly at home).
get used to patients asking awkward questions, checking performance and outcomes
Services will look how consumers (professionals and patiens alike) will want them to look.
No single interface fits all and therefore. PHRs strongpoints are in connectivity with
multiple platforms and applications. See e.g. Doc Searls ideas about VRM or the ideas
about open APIs
11.5.6 What are the opportunities for your sector?
Web-based PHR would bring in infinite opportunities for the health care which is my
sector. It could be an instrument for social reform, where consumer empowerment would
be an inevitable key of successful services. In addition to that it would be used to improve
quality of life for all people, by using guiding principles of promoting welfare and tapping
as much benefits of its resources as possible. Web-based PHR would also be essential
as a leading tool for the growing multiplicity of people at risk of serious diseases. As
preventive monitoring it would become an urgent tool in health care by reason of present-
day living conditions. Web-based PHR would be an important for a holistic approach to
consumer-driven health care services. Using such data bank for improving security and
quality of the services would bring in new pathways and an advance of knowledge which
also gives broader spectrum for all sectors.
I consider people my sector - so opportunities are about creating autonomy for people.
Community-based services are more likely to grasp these because they help solve some
of the problems of coordinating care in diverse locations in the community - using the
patient as the fulcrum of care coordination, instead of trying to get different service
providers to share information effectively and safely.
Our sector is an increasing scientific research and its main goal is to define and design
technical instruments, optimization models and methods for supporting clinical decisions.
new drivers of policy change, new forms of leadership, new provider forms
I see huge great commercial opportunities in this field.
11.5.7 What are the opportunties for other sectors?
The opportunities for other sectors as Internet and electronic techniques are untold. Web-
based PHR would bring new possibilities in technical development and push on that

27 October 2008
progress. There would also be further possibilities for personal services and research.
Web-based PHR also widens possibilities of data flow and storage in that context with
new industrial possibilities in production and services.
According to us the other sectors could benefit from ours thanks to the availability of
services use in an automatic way the knowledge collected by the doctors during the
years. In fact, using the traditional instruments a doctor takes decisions only on the base
of his own experiences (or of his assistants). Instead with the knowledge management
instruments (to be realized), it is possible to have access to the knowledge of all the
doctors (potentially) interested in the same pathology. It means that it is possible to have
more accurate diagnosis, more accurate therapies, sharing info between doctors and
doctors, doctors and patients and finally patients and patients in all over the world.
added value services, shifting professional role boundaries, new forms of providers
(unbundling of acute sectors, rebundling through distributed yet integrated health
systems)
An open PHR environment enables all parties to connect to it an build their own business
case on top of open technology.
11.5.8 Given the picture you have painted, what are likely key barriers to realising the
full potential?
Update the UK's laws to allow patients to get their PHR data from NHS electronic medical
records. And open up the market in the UK to allow start-ups to compete instead of
leaving innovation in the hands of the Connecting for Health oligarchs.
Persons in authority and politicians have a key role for full potential of Web-based PHR.
Lacking attitude and knowledge, they could restrain further development.
Lack of the public people perception, attitude and knowledge could have a great impact
as a key barrier. Lack of money for development, publicity and introduction also controls
the future.
Healthcare practitioners who see patient access to records at a distraction to efficient
working. Patients who don't want to take more responsibility for their own health care
On the base of our experience in this sector, the barriers are much more related to the
data acquisition (clinical cases) necessary for the learning mechanism. In fact more often
they are not available for aspects related to the privacy of the patients.
The speed of adopting innovations in healthcare and the endurance needed to change a
system - not a single entity.
fear by policy makers and health system leadership of where it all might lead
11.5.9 Given the picture you have painted, what are likely key enablers to realising the
full potential?
Key enablers for realising the full potential are converse of the barriers. Selling the idea is
a key factor as well as enough money for this evolutional progress. Here the persons in
authority and politicians also have a key role for full potential they have to buy the idea.
The same is about the public people, their perception attitude and knowledge is a
precondition for general use of Web-based PHR.
New information and communcation technologies opening up new possibilities, often
outside healthcare, demonstrating what can be possible.
Government policy driving the NHS in this direction - supporting patients taking more
control of their care
The key factors are related to advanced knowledge of machine learning techniques and
data warehousing.
People. Those with vision, stamina and willingness to listen to others will change
healthcare.
excitement by patients and consumers about where it all might lead

27 October 2008
11.5.10 Given the picture you have painted, what are likely key research and policy
priorities?
Research and policy priorities would be the key factors for healthy people. Health related
information about the prevalence of health problems, treatment, people´s life style, safety
and services would be fundamental. In addition to that the effectiveness and efficiency of
the services and changes, from what is now, would be of great potential for policy
makers. As a subject for research the users and the usefulness of Web-based PHR
would be very important for further development of technique and services.
And with the people most likely to take advantage of these technologies, and are they the
people who have the most health needs?
Interconnectivity and identifying the killer app.
think more about where it all might lead, rather than focusing on purely technical issues
(technology, standards, etc)
11.5.11 What do you think is at the leading edge in this area?
I think consumers are at the leading edge of the evolution of computers and Internet
techniques in health care. The vision of consumer empowerment is the main target for
health promotion and self-care. Strengthening their awareness and self-help would work
for better outcome of own health care services. The emphases are set on activating and
promoting consumers as strategic partners in own health care and health promotion. The
vision of Web-based PHR has to be clear and collective. The key factor of its future is
transforming the belief on its advantages. Policymakers have to see the practical
advances for more effective and efficient health care services. Empowered consumers
also have to perceive the advances of using Web-based PHR to improve their health and
welfare.
Websites demonstrating what patients can learn from each other, example, Patient
Opinion, DiPEX...
Professionally? Probably GPs, especially those practices like the ones in Derbyshire and
Oxfordshire who already make available e reocrds to their patients
We think that the leading edge in this area is related to the use of web services combined
with machine learning, data warehousing and Operations Research method and models
in a field in which generally the decisions are only taken by the men.
On a business level probably companies such as American Well or Hello Health. On a
research and idea level those people who create visions for improving conversations
between people, especially in healthcare. Think Doc Searls, Jay Parkinson or
ICMCC/Lodewijk Bos.
Depends in which direction you're heading... There are those who see greater
patient/consumer control as the direction, while others continue to put their faith in
industrial era models of healthcare and think that is the leading edge. I favour the more
disruptive post-industrial, and probably post-information age thinking.

27 October 2008
Annexe C - Participants and contributors and
researchers
Interviewees
Carol Clark – Director of Stakeholder Engagement for NHS Connecting for Health
Sandy Scales – Healthspace Lead for NHS Connecting for Health
David Evans – Senior Data Protection Manager, Information Commissioner
Dr Amir Hannan – GP
Sir Muir Gray – Director National Knowledge Service, NHS
Professor James Barlow – Innovation Studies Centre, Imperial College, London
Professor Yunkap Kwankam - WHO, Coordinator eHealth
Mark Treleaven - Microsoft
John Coulthard - Microsoft
Roni Zeiger - Google, Product Manager for Google Health
Markku Koppinen - Dunn Humby, Managing Director UK & Ireland
Katherine Murphy - The Patients' Association, Director of Communications
Dr Manpreet Pujara - former Chair of the EMIS National Users Group and National
Clinical Lead for GPs
Dr Andrew Jones - Nuffield Health, Group Medical Director
ICMCC Panel Discussion participants
Mr. Mark Treleaven (Microsoft)

Dr. Marlene Winfield OBE (NHS HealthSpace)
Prof. Carol Dezateux (Wellcome Trust)
Dr. Brian Fisher (PAERS/EMIS)
Mr. Richard Foggie (UK Department for Business, Enterprise and Regulatory Reform)
Dr. Richard Fitton (Caldicott Guardian)
Prof. Andy Marsh (Visiting Professor University of Westminster, patient view)
The panel was chaired by Prof. Georges Kutukdjian (UNESCO).
Future Focus Workshop participants
Workshop 1
Richard Curry, Scientific Advisor, DH, R&D Directorate
Martin Strange, Head of Information Governance and Caldicott Guardian Lloydspharmacy
Mary Hawking, GP, Kingsbury Court Surgery
Marlene Winfield, Director for Patients and Public, NHS Connecting for Health
Graham Worsley, Lead technologist Assisted Living innovation Platform Technology
Strategey Board
Mark Treleavan, Healthcare Industry Manager, Microsoft
Bruce Elliott, Programme Manager - Building Communities, NHS Connecting for Health
Mark Outhwaite, PHR Project Lead and Director, HOIP
Anoop Sing, Director, HOIP
Workshop 2
Mohammad Al-Ubaydli, Honourary Clinical Research Fellow, UCL, CHIME
Kathy Broughton, Transition & Benefits Manager, South Central SHA
Dave Evans, Senior Data Protection Manager, Information Commissioner's Office
Denis Carroll, Director HOIP
Trevor Perry, Director Government Affairs, GE Healthcare
Anoop Singh, Director, HOIP
Nick Gaunt, Specialist Associate, NHS Institute

27 October 2008
Sanjeev Gupta, Head of Service Delivery, Commissioning Support Service (London
PCTs)
Nigel Crawford, Urban Development International
Hanene Rahmouni, PhD Student UWE
On-line and email contributors
Mohammad Al-Ubaydli, Honourary Clinical Research Fellow, UCL, CHIME Cambridge,

United Kingdom
Gyda Halldorsdottir, University of Iceland, Reykjavik, Iceland
Andrea Jones, Centre for Nursing and Midwifery Research, University of Brighton, United
Kingdom
Professor Lucio Grandinetti, University of Calabria, Cosenza, Italy
Ornella Pisacane, Post-doctoral student in Department of Electronics,, Informatics and
Systemistics, University of Calabria, Cosenza, Italy
Dr Mike Tremblay, Trembaly Consulting, Kent, United Kingdom
Mika Heiniö, Managing Director Geowell Oy and Board Member of HOIP, Helsinki,
Finland
Dr Lodewijk Bos, President ICMCC & Director Strategy Planning WABT-ICT-UNESCO,
Utrecht, Netherlands
Maarten den Braber, Nexthealth, Amsterdam, Netherlands
Professor Igor Kuznetsov, Medem, Russia
Jeffrey Wallace CTO COTS technology USA
Professor Mohamed Shehab – College of Computing and Informatics, University of North
Carolina at Charlotte
Colin Anderson, CEO Pinoptic, www.pinoptic.com

27 October 2008

The Web-Based Personal Health Record - Research Implications For Patients, Consumers, Health Services and UK Industry

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The web-based personal health record –

research implications for patients,

The research team:

All members of the project team are Directors of HOIP CIC

Web based Personal Health Record – Release Version 1

Web based Personal Health Record – Release Version 2

Web based Personal Health Record – Release Version 3

1.2 Policy context

1.3 The web-based PHR – setting the scene

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1.4 Perspectives of participants and contributors

1.5 The challenge of commissioning and delivering research in web 2.0

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1.6 Policy implications and alignment

1.7 Confidentiality, access and trust

1.7.5 We have also looked at the issue of Trust –

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1.8 The user/consumer perspective

1.9 The service perspective

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1.10 Technology perspectives

1.11 Industry perspectives

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The challenge of commissioning and delivering research in web 2.0 timescales

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(d) A HoIP social network (http://hoipcic.ning.com) was set-up to promote online

(e) A call for contributions from interested parties

Web based Personal Health Record – Release Version 12

Web based Personal Health Record – Release Version 13

2.1.2 The report identifies 6 main challenges:

Ever higher expectations

Demand driven by demographics

Health in an age of information and connectivity

The changing nature of disease

A changing health workplace

Achieving the strong partnership that characterises personalised care is only

Web based Personal Health Record – Release Version 14

2.2 The Health Informatics review

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3.2.3 In addition an important

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3.4 Medicine 2.0

3.5 Definitions of the PHR – Personal health record or personal

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The Personal Health Record

Secure added-value trusted data

3.5.6 The diagram is not meant

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3.6 Evolution of the Web-based PHR and

adoption and business application of specific Source: Gartner Group

Health 2.0 in state-

Health 2.0 in market

Web based Personal Health Record – Release Version 21

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Constantly evolving, the web with an emphasis on stronger semantics is moving

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4.2 Overview themes from the literature review

Research challenge: Commissioning provocative research that is explicitly framed to

4.3 Visions for the future