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Nationwide Health Information Network (NHIN)

-- Implications for Disease Registries
Dan Russler
Russler, MM.D.
D
VP Clinical Informatics
Oracle Health Sciences Global Strategy
 Agenda
• Disease Registry Concepts
• What is a disease registry?
• Types of disease registries
• Uses of disease registries
• Populating a disease registry

• National Disease Registries

• Why the US Nationwide Health Information Network (NHIN)?
• Other National Examples
• UK National Health Service “National Spine”
• Canada Infoway “Provincial Reference Architecture”

• New Concepts in Disease Registries

• Collaborative Disease Registries

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 Disease Registry Concepts
• What
Wh t is
i a “Disease
“Di R
Registry?”
i t ?”
• A “Disease Registry” is a kind of “Patient Registry”
• A list of patients with a focus on a specific disease
• Includes p patient characteristics related to the disease,, e.g.
g lab results
• Patient Registries include many other foci
• Immunization Registries
• Geographic Registries
• Practice Registries
• ….
• What is a “Disease?”
• Definitions
• early 14c., "discomfort," from O.Fr. desaise, from des- "without, away" (see dis-) + aise
"ease" (see ease). Sense of "sickness, illness" first recorded late 14c
• (Online Etymology Dictionary)
• a disordered or incorrectly functioning organ, part, structure, or system of the body
• (based on Random House Dictionary)

• Cause of Disease = Genetics + Environment + Timing

• NIH Office of Rare Diseases Research
• “All diseases are rare diseases”

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 Types of Disease Registries
• “Common Disease” Registries
• Registries often planned at local, regional, national or international levels
• May or may not use national communication architectures, especially at
local levels
• Quality Disease Registry Examples
• a disease “practice
p register”
g is a UK NHS q quality
y measure
• a US provider “meaningful use” measure (“lists of patients by specific
conditions to use for…”)

• “Rare Disease” Registries

• Adequate number of persons (denominator) may only be possible at
national and international levels
• Since more organizations must participate in order to generate more
records, more likely to use national communication architectures for
collaboration infrastructure

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 Uses of Disease Registries
• Learning
L i M More about
b tQ Quality
lit
• JCAHO requirements for quality improvement operations
• CMS requirements for quality reporting

• Learning More about Disease

• Dietary Patient Registries
• Environmental Site Patient Registries
• Genetic Tissue Bank Registries

• Learning
g More about Treatment
• Clinical Trial Registries – medications and medical devices
• Tumor Registries

• Tracking and Preventing Disease

• Public Health Disease Registries
• Bio-surveillance Registries

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 Populating Disease Registries
• Current Techniques are Manual
• “We have 200 full-time nurses abstracting data from paper and
electronic medical records”
• “Nurses may spend 40 minutes per patient abstracting data for one
disease registry”

• Automated
A t t dTTechniques
h i ffor Di
Disease R
Registry
i t P Population
l ti
• Require reliable, standardized data sources
• HL7 Continuity of Care Documents (CCD)
• US Certified Electronic Health Records (EHRs)
• Require standardized data targets for reporting
• HL7 eMeasure Health Quality Measure Format (HQMF)
• Other standardized reporting targets under development
• Reduce, but may not eliminate, manual chart abstraction time
• About 30% of data still not normally standardized in EHRs

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 Why the NHIN for Disease Registries?
NHIN Value Propositions State HIE “awards will also
• One legal network contract instead of strongly encourage states
multiple point-to-point legal contracts
to consider p
participating
p g
• One
O technical
t h i l communication
i ti
agreement instead of multiple point-to- in the Nationwide Health
point technical agreements Information Network as
• “The more organizations using the NHIN,
th more valuable
the l bl ththe NHIN will
ill b
become ffor
an approach
pp to HIE. This
everyone.” – a variation on Metcalfe’s Law would create a pathway
toward seamless,
nationwide health
information exchange.”
12Feb2010 - Dr. David
Blumenthal, The National
Coordinator for Health Information
Technology

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 US Disease Registry Opportunities?
Sign the NHIN DURSA and Comply with Inspections

Add Disease Registries to NHIN

(national or international registries)

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 International Disease Registries
• Very important for world-wide epidemic tracking

• More important for rare diseases than common diseases

• Very rare diseases may only have a few people in each nation
• Very
V hard
h d tto study
t d di
diseases with
ith only
l a ffew people
l iin a registry
i t

• Requires
R i compliance
li with
ith national
ti l llaws and
d iintegration
t ti with
ith national
ti l
architectures (via international standards)
• National Architectures influence disease registry implementations

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 National Health Architectures

Centralized EHR Architecture Decentralized EHR Architecture

• User logs in to obtain central information • User logs into local EHR
• UK – direct login to Spine (see above) • EHR retrieves data only from other HIOs
• Canada – login via EHR applications • US - No centralized data storage
to centralized data (less direct than UK)

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 UK Disease Registry Opportunities?
Negotiation with the NHS “Ethics and Confidentiality Committee”

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 Canadian Disease Registry Opportunities?
Negotiation with the each Province for inclusion in the Provincial Architecture

Infoway
Provincial

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 National Exchange Initiatives
Compare Similarities Contrast Differences
• Based on HL7 V3 Reference • UK National Spine:
Information Model Standards • Stores personal characteristics of patients, such as demographics
• Stores summarised clinical information such as allergies, current medications and
adverse reactions to drugs
• Interfaces with local HIT
• Provides a Secondary Uses Service (SUS), using anonymised data for business
systems that connect to the reports and statistics for research and planning
national infrastructure
• Interfaces with all the local IT systems within the National Programme.
• Canada Infoway y Provincial Reference Architecture
• Ensures the security of these • Stores personal characteristics of patient, Client Registry
local systems that connect to • Stores clinical information, Shared Health Record Repository
the national infrastructure • Provides Public Health Surveillance Solution
• Interfaces with local IT systems and privacy legislation are provincial rather than
national governance decisions
• Provides access to a
summary of the clinical record• US Nationwide Health Information Network
of each member • No central storage of personal characteristics; all person demographics are stored by
Health Information Organizations (HIOs)
• No central storage of clinical information; all clinical information is stored by HIOs
• P
Provides
id services
i ffor • Provides web services for Secondary Use, but secondary use reports are provided
population data reporting only by HIOs, e.g. individual federal agencies or private reporting organizations
• Interfaces with any public or private HIO that signs the NHIN contracts (DURSA) and
passes NHIN Gateway implementation testing inspections; interfaces with local public
and private IT systems and privacy policies are local decisions driven by local
regulation

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 Recent Concepts in Collaborative Disease Registries
Require
q an NHIN Exchange
g in place
p

• Multi-organizational collaborative disease registry governance

• Many separately operated disease registries decide to collaborate
• All agree to same privacy and security model
• Each disease registry collects data related to respective disease
• Each registry allows a cross-walk between registries for individual patients
• Supports patients with multiple diseases (“co-morbidities)
• Examples: patients with diabetes, hypertension, and obesity
• Supports better clinical trial support
• Trials that require inclusion of multiple diseases
• Trials
T i l th
thatt require
i ththatt some diseases
di are excluded
l d d

• Technical collaboration (data communication) between registries, e.g.

data moving from PHR to local to national to international disease
registries
• Requires strict data standardization!

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