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Feedback, consultation or co-design.

At what
point is it most useful to engage with
patients to re-design services to better meet
their needs?
Right from the start
When you have formulated some ideas to explore
with them
When seeking their views on your proposals
By asking for feedback on their experiences of
existing services.

Designing Patient- Centred


Services
Feedback, consultation or co-design. At
what point is it most useful to engage with
patients to re-design services to better
meet their needs?
1. Right from the start
2. When you have formulated some ideas to
explore with them
3. When seeking their views on your proposals
4. By asking for feedback on their experiences of
existing services.

Co-design
a process where professionals empower, encourage, and guide users
to develop solutions for themselves.
co-design encourages the blurring of the role between user (patients)
and professionals, and enables services and/or care pathways to be
developed together, in partnership
by encouraging the trained designer (professionals) and the user
(patients) to create solutions together, the final result will be more
appropriate and acceptable to the user
the quality of design increases if the stakeholders' interests are
considered in the design process.
co-design differs from participatory design in that it does not assume
that any stakeholder a priori is more important than any other.

Better care for a better life


with IBD
A programme for
improving the quality
of care by codesigning and
implementing new
approaches to the
management of IBD
in Scotland

Multi-stakeholder collaboration, led by


Crohns and Colitis UK, to co-ordinate IBD
Quality Improvement across Scotland
Ensuring alignment with Scottish
Government priorities
Taking the best good local initiatives in IBD
and disseminating them across Scotland
Promoting collaboration and engagement
with IBD Research across Scotland

Pan Scotland IBD Care


Delivery Plan
Better Out Comes for
Patients

Pan
Scotland
IBD Care
Delivery
Plan
Framework
Audit

IT e Health Strategy
Health Economics
SIGN Guidance

UK Standards for
Inflammatory Bowel
Disease

National Multistakeholder Steering


Group
IT Task
Group

Pilot
outcomes
Pilot work
streams
Service
redesign
Co designed
service
mapping
Pilot Working
Groups

Partners
e.g. TOC

IBD
Nurses

Health Board Pilot Structure


Local Patient Rep
Local Patient Rep
Clinicians
Clinicians
Pilot Working
Pilot Working
Group
Group

Nurse
Nurse
GP
GP
Dietician
Dietician
Steering Group Rep
Steering Group Rep

Health Board
Health Board

Smart phone applications

Arena meeting, London 2014

Mapping the patient journey

NHS Highland Patient Mapping

Patient Survey
http://www.crohnsandcolitis.org.uk/whats-new/scottish-ibd-patients-survey-results

NHS Highland IBD pilot

t work plan produced July 14, revised 11/3/15.

Work stream

One

Early diagnosis Faecal calprotectin

Description

Faecal
calprotectin is a
stool biomarker
for gut
inflammation.
FC could be
used to
differentiate IBS
from IBD
patients.
IBS patients
could then be
referred directly
to dietetics.

Outcomes

Measurement

1.

Primary care
uptake
IBS dietetic
referral
STT
endoscopy use
GI OPD use

2.
Colonoscopies
if GP did FC
% Referral GI
NSTT
Cost incurred
for FC
3.
Cost incurred
for IBS dietician
4.
5.
6.

All patients
presenting in
clinic with [X
]number of
IBD
symptoms to
have stool
specimen
sent for
Faecal
calprotectin
No. of times
advise
provided to
GPs to carry
out FC and
identify the
result
No. of
referrals to
IBS
No. of STT
Reduction in
OP clinic
attendance
Cost of
service

Lead

Milestone

Jobs/Notes

1. Literatur
e Search

Communi
ty FC
2. NHS
Highland
Lab FC
3. ??? Point
of Care
Testing
for GPs
4. Protocol
FCResultsGPS
5. Educatio
n GP
Surgeries

Two

Fast track referral


and rapid access
IBD services.

Three

IBD MDT

Four

Ascertaining our
population

There is a need
for clear referral
processes for
both new and
return IBD
patients, 24/7.
These include
dedicated
telephone and
email
communications
& rapid
access/One Stop
clinics

All patients should be


discussed at an IBD
MDT. New diagnoses,
escalation of
treatment, surgery
decisions, introduction
and stopping of
biologic drugs

We are uncertain
about the total
number of IBD
patients under our
care in NHS Highland
(and the Western
Isles). Without this
information, it is
impossible to plan
services. We need to
characterise the IBD

in OOH referrals
time for first referral
from GP to clinic
time to diagnosis
staff costs e.g.
IBD Nurses
Gastro
MDT routinely
operational
Care Navigator role in
place
Clinics (?
Consultations)

1.

No. of OOH

referrals
Measure time
to diagnosisreduce by how
much? ( this
can start of as
a fixed number
of weeks.
Consider how
these would be
counted i.e.
from symptom
presentation to
referral etc)
Costs
No. of MDT
mtgs
No. of
consultations

1.
better monitoring of
patients
2.
Shared decision
making/discussion
Holistic care
Biologics withdrawal
plan
Setting Up Costs

No of biologic

withdrawals
Patient opinion
on holistic care
better

Accurate
demographics of NHS
Highland patient
population

Information

available on
no. of patients
with IBD in
NHS H
currently being
treated
As above on
drug regime

2.

3.
4.
5.

1.

2.

1.

2.

3.

4.

1.
2.
3.

1.

Stock take
what
happens
now
Prioritise
realistic
goalshierarchy
What is
needed to
implement
new
service ?
Start MDT

Scope
necessary
resources
Availability
clinicians
Implementat
ion

Options
appraisal
2.
Costs
3.
Cloud
finance
through
local
Chapters for
ALBA Soft
National Registry
PICTS
ALBA Soft (GP
Data Mining)
C&C Local Group

Five

Maintaining care.

Six

Dietetic service
provision

Seven

Guided self
management and
peer support

Multiple agencies can


look after patients with
long term conditions. It
is desirable that IBD
care is not wholly
looked after by
specialist doctors.
Some patients would
like the opportunity to
use guided self
management.
Work needs to be
performed to
understand which
patients are suitable
for which service and
to describe that
service.

Dietetics has a huge


role in the
management of GI
disease and in
particular IBS/IBD. We
need to work on the
availability of dietetic
service and on
protocols for access
throughout a patients
journey

Many patients express


the desire to be able to
look after their own
condition safely and
with support, when
needed. This requires a
dedicated pathway and
protocols to enable this
to happen efficiently.
Allow patients to
be supported if
they wish to take

GP-shared care
arrangements
Non traditional
clinics
with video and
tele clinics
( Guided self
management)
routine, scheduled
OPD
clinic appointments
Joint
medical/surgical/
dietetics/psych
clinics
transitional care
clinics
for juvenile onset
IBD
Link Nurses ?
Liaison Services ?
[Cost of
implementation]

1.

[LPLM]

proportion of
patients
in our NHSH
population
being supported to
take
up self
management.
routine primary and
secondary care
clinic
appointments

[ES/SS]

1.

2.

3.
4.
5.
6.

No. of:

a.
vc
b.
telephon
e
c.
outpatie
nt clinics
Direct and
indirect
costs/benefits
of above
No. joint clinics
held
Direct and
indirect costs of
3
No. of
transitional
care clinics
Direct and
indirect for 5.

1.
2.

2.

3.
4.
5.

Protocol
Development
Education

Patient
Education
Design
dedicated
protocol/path
way to
enable
Refer to
recommenda
tions [?]
Whats
Available
PICTS/Smart

Where are we now?


The report of Phase Two of the
project...
The information technology
infrastructure and software
development related to IBD care has
been identified as a significant
aspect of the project and any
proposed pan Scotland Delivery

IBD Smart phone App

Angus J M Watson
Professor of Colorectal
Surgery
NHS Highland

More mobile phones than toilets

Smart Phones & IBD


Geographically
dispersed
population
40% Scotlands land
mass
330K population
~600 IBD patients
Remote & Rural
hospitals
Raigmore, Inverness

Daily data
Data based on
Harvey Bradshaw
Simple Clinical Colitic Index

Mobile phone wiped of data


Data remains anonymised until it
crosses NHS firewall
Patients can message though the
app

Focus groups
Patients
Enthusiasm &
support
Transform clinical
encounters
Reassured by being
monitored
Increased contact
availability
Potential of new
technologies

Staff
Patient reported
data valuable
Integration of app
into healthcare
delivery good
app easy to use
See the potential

Next steps for the App


Link to Scottish EPR
Integration with IBD
registry
Data flow to ISD and HES
Link with IBD portal?
A hybrid system?

Region wide adoption


Online peer support group

cottish IBD Project Outcomes DRAFT


IBD Standard

Outcomes

Deliverables

Project Activity

Better service organisation


and improved quality of
clinical care and patient
experience for both acute
treatment and ongoing
support needs as a long-term
condition.

Standard A
High Quality Clinical
Care

Safe Care

Maternity, mental health and primary care


components of the Scottish Patient Safety
Programme implemented with
measureable improvements

High Quality Clinical


Care

Unscheduled and Emergency


Care

1.
2.

Out of hospital care action plan


Increase flow through the system

High Quality Clinical


Care

Care for Multiple and Chronic


Illnesses

1.

Key pressure points in the entire patient


pathway for most common multiple
illnesses will be identified and actions
agreed

High Quality Clinical


Care

Prevention

Early detection of cancer

Measurements
1.

All patients surveyed will report


patient experience ratings as
good or very good by May 2016

Developing models for


psychological intervention

1.

Improvement of patient pathway


reducing pressure on A&E
departments service redesign

No of patients attending A&E reduced


in Pilot trials by [x]
No of patients seen using vc
appointments increased by [x%] in
Pilot trials

Introducing new approaches to IBD


Care focused on enabling all IBD
patients to live the best possible
life with their condition.

1.

To increase the proportion of


people diagnosed and treated in
the first stage of
[breast],
colorectal [and lung cancer] by
25%, by 2014/15

Standard B
Local Delivery of Care

Primary Care

2020 Vision for expanded primary care


New models of place-based primary care

Increasing the role of Primary CareGP engagement

1.

GP active member of project


Pilot and Working Group,
including IT Task group

Local Delivery of Care

Integrated Care

1.

Public sector reform third sector


and NHS partnership

1.

[1]

[2]

Preparatory work with NHS Boards,


local authorities, third and independent
sector and the building of effective
Integrated Health and Social Care
Partnerships

Crohns and Colitis UK Proposal to The Quality Unit, DG Health and Social Care (February 2013)
2020 Vision

UK-Wide ambitions
Capturing lessons
learned in Scotland
Adapting these to
address UK-wide
issues
Exemplar for other
long-term
conditions

Thank you!

Elaine Steven
Peter Canham
Shona Sinclair
Andrew Greaves
Angus Watson
Cath Stansfield
Pilot Working Groups
National Steering Group
Strategic Planning and Clinical Priorities Team
Scottish Government