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Amnon Shabo, PhD WCIT 2014 Guadalajara, Mexico
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© Amnon Shabo (Shvo)
The vision of
Independent Health Record Banks
Amnon Shabo (Shvo), PhD
Chair, IMIA Health Record Banking Work Group
Chair, EFMI Translational Health Informatics Work Group
Co-chair, HL7 Clinical Genomics Work Group
Research Fellow, University of Haifa
Towards a universal health information language
Revolutionizing healthcare through independent lifetime health records
© Amnon Shabo (Shvo)
Motivation and Passion…
2
KNOWLEDGE
We don’t know much
more than we know
Case-based
reasoning
The case is the
lifetime EHRHealth
Record Banking
DATA
Individual’s Data
Fragmentation
Decision making
Is hard!
Humans
Machines
Case-based
(tacit) knowledgeTrial & error
Sustainability
© Amnon Shabo (Shvo)
From Medical Records to the EHR…
3
Medical
records timeco
nte
nt
From medicine to health…
Longitu-
dinal,
possibly
life long
Cross-institutional
Medical recordEvery authenticated
recording of medical
care (e.g., clinical
documents, patient
chart, lab results,
medical imaging,
personal genetics, etc.)
Health recordAny data items related to the
individual‟s health (including
data such as genetic, self-
documentation, preferences,
occupational, environmental,
life style, nutrition, exercise,
risk assessment data,
physiologic and biochemical
parameter tracking, etc.)
Longitudinal (possibly lifetime) EHRA single computerized entity that continuously aggregates and summarizes the medical and health records of individuals throughout their lifetime
Should Also
include
genetic data
© Amnon Shabo (Shvo)
EHR – layers of temporal and summative data
4
Temporal Data
Summative Info E H
R
Evidence
Sensitivities | Diagnoses | Medications | etc.
Medical records: charts, documents, lab results, imaging, etc.
Topical
summary
Non-
redundant
lists
On
go
ing
extr
acti
on
an
d s
um
mari
zati
on
Personal genetic
variations
Genetic-based
disorders
© Amnon Shabo (Shvo)5
How could Lifetime EHR be Sustained and Preserved?
From the US PCAST report (2010):“The approach that we describe requires that there be a common
infrastructure for locating and assembling individual elements of a patient’s
records, via secure “data element access services” (DEAS). Importantly,
this approach does not require any national database of healthcare records;
the records themselves can remain in their original locations. Distinct DEAS
could be operated by care delivery networks, by states or voluntary
grouping of states, with possibly a national DEAS for use by Medicare
providers. All DEAS will be interoperable and intercommunicating, so that a
single authorized query can locate a patient’s records, across multiple
DEAS.”
Is it really an axiom?!
Do we take for granted existing paradigms?
© Amnon Shabo (Shvo)
Challenges of Data Integration in Healthcare
When data is federated (discovered?) on the fly:
Data sources might not be available (CIS is down or source is out-of-business)
Hard to know in advance what are the formats the incoming data
Is it really possible to create the EHR summative layer in a
data federation setting?
Redundant data
Contradictory data
Partial data
non-reliable data
Alternative approach to data federation is aggregation:
Bring data relating to the same individual into the same logical place
6
© Amnon Shabo (Shvo)
Types of PHR versus EHR/EMR
PHR: Personal Health Record
Patients hold/control/own their records: add, create, and correct/delete data
EMR: the traditional healthcare provider-created records
Patients have no access to complete records
NEJM recent article
“Your Doctor’s Office or the Internet? Two Paths to Personal Health Records” Tang and Lee / March 26, 2009
Distinguishes between “stand-alone PHR” and “Integrated PHR”*
Recommends the use of Integrated PHR
As an extension of the EMR
Or “portals” into the EMRs
Offers patients resources that providers are willing to permit
7
© Amnon Shabo (Shvo)
EHR Sustainability Constellations
8
Government
Centric
Provider
Centric
Consumer
Centric
Non-Centric:
Independent
EHR Banks
(IHRBs)
Regional
Centric
e.g., UK
e.g. USA
e.g., Canada
e.g., Google Health
Big brother Partial data
LimitedNon-reliable
Data
Risk
© Amnon Shabo (Shvo)
EHR Sustainability and IHRB Assertions
Longitudinal EHRs should not be virtual / federated
Rationale*: sources might not be available or be semantically different; true summarization cannot be done “on the fly”
Given the need for aggregated EHR, the challenge is –EHR sustainability!
Main assertion*:None of the existing players in the healthcare arena can, or should, sustain lifetime EHRs
Rationale:
Involves intensive IT computing tasks (archiving, preservation, etc.) which are not the main focus nor expertise of existing players
If an existing player sustains EHRs, it might lead to ethical conflicts
9
Can
not
Should
not
© Amnon Shabo (Shvo)
An Alternative Solution: IHRBs
A new player: Independent Health Records Banks (IHRB),
whose main duty is to sustain individual EHRs for their lifetime
Stems from socio-ethical considerations
Enabled by information technologies and data standards
New legislation needed to establish IHRBs
10
Call for public
discussion
© Amnon Shabo (Shvo)
Main principles of the IHRB legislation
The medico-legal copy of a medical record resides solely in an IHRB
An IHRB must be independent of healthcare providers, health insurers,
government agencies, or any entity that may present a conflict of interests
An IHRB must function as an objective entity, serving all stakeholders
An IHRB is the custodian of its customers‟ EHRs, thus avoiding the need
for the sensitive definition of EHR ownership
Allow for multiple independent IHRBs, regulated by national (or international)
regulators, preferably functioning as not-for-profit organizations
A consumer‟s EHR is identified by its IHRB account number, so there is no need
for unique IDs at any level (regional, national or international)
Authorized access to all parties; only ethical committees can limit patient access
A consumer can move from one IHRB to another
Holding multiple accounts is not recommended, however
any attested medical record must reside in only one IHRB account
11
© Amnon Shabo (Shvo)12
New
Legislation
Operational
IT Systems
Provider
Medical
Records
Archive-
Independent
Health Records
BankOperational
IT Systems
Provider
Medical
Records
Archive-
Operational
IT Systems
Provider
Medical
Records
Archive-
Independent
Health Records
Bank
Standard-based
Communications
Operational
IT Systems
Provider
Standard-based
Communications
Operational
IT Systems
Provider
The Conceptual Transition
Current constellation New constellation
PatientIndividual
© Amnon Shabo (Shvo)
The EHR Continuous “Production Cycle”
1. Healthcare Provider
receives the current
EHR from the
patient‟s IHRB
2. Provides care
to the patient
3. Sends medical
records back to
the patient‟s IHRB
4. EHR is updated
13
Healthcare ProvidersHealthcare ProvidersHealthcare Providers
Independent
Health Records
Banks
Independent
Health Records
Banks
Independent
Health Records
Banks
Clinical &
genomic
Data
Current
EHR
Health Consumers
12
3
4
© Amnon Shabo (Shvo)
The EHR “Production Cycle” with Pharma / Research
1. Clinical Trials Sponsor
receives the current
EHR from the
patient‟s IHRB
2. Select, enroll &
engage patient
in a clinical trial
3. Sends trial records
back to the patient‟s
IHRB account
4. EHR is updated
14
Healthcare ProvidersHealthcare ProvidersClinical Trials / Research
Sponsors
Independent
Health Records
Banks
Independent
Health Records
Banks
Independent
Health Records
Banks
Clinical &
genomic
Data
Current
EHR
Individuals enrolled
in clinical trials
12
3
4
© Amnon Shabo (Shvo)
IHRBs and the patient’s bill of rights
The IHRBs legislation follows the spirit of the patient‟s bill of rights,
whose main principles are:
The right to receive copies of your medical records
The right to have continuity of care when changing providers
The right to have a second opinion
The right to go through an informed consent process
IHRBs enable the true realization of the goals of the patient‟s bill of
rights and especially the goal of continuity of care!
15
© Amnon Shabo (Shvo)
IHRB macroeconomic transformations
16
Archiving costs
Health
Insurers
Health plan includes
IHRB account charges
Healthcare
Providers IHRB
Healthcare
Consumer
Pay per amount of storage,
transactions and servicesIHRB
Healthcare
Consumer
© Amnon Shabo (Shvo)
IHRB Main Benefits
Healthcare providers cut costs of long-term archiving for medical records
Healthcare providers have a complete medical history of any patient requesting care
Healthcare providers have EHR summative information that facilitates the intake of new patients
The EHR might also include moderated self documentation and other sources of health data
Multiple competing IHRBs will provide better services to all parties
No need for unique IDs that might harm individual privacy
Privacy is better protected as it is in the core of the IHRB activity; mitigates the unavoidable tension of privacy versus availability
Based on proper patient consent, truly anonymized data could be made available to public health agencies, clinical research institutes, and the pharma
17
© Amnon Shabo (Shvo)
IHRB Bills were introduced in the US Congress
Brownback (R-KS): Independent Health Record Bank Act of 2006 :
IHRB goals are to save money and lives in the health care system
Only non-profit entities are permitted to establish IHRBs
IHRBs function as cooperative entities that operate for the benefit and interests of the membership of the bank as a whole
Revenue:
IHRB‟s may generate revenue by
charging health care entities account holders account fees for use of the bank
the sale of non-identifiable and partially identifiable health information contained in the bank for research purposes
Revenue will be shared with account holders and may be shared with providers and payers as an incentive to contribute data
Revenue generated by an IHRB and received by an account holder, healthcare entity or health care payer will not be considered taxable income
18
© Amnon Shabo (Shvo)
Global Approach to IHRB Legislation
A guiding legislation should be composed by international bodies (e.g., United
Nations; World Health Organization) with senior representatives of all nations
Bring about a legislation in the various counties in the spirit of the guiding
legislation, possibly adjusted to national and/or regional restrictions
In the guiding legislation, openness of an IHRB to any „citizen of the world‟
should be required, in order to addresses two goals:
Better support the internationalization of a health record in terms of
translating free text, mapping local terminologies, etc.
Prevent a situation where a single IHRB will consist of data of an entire
ethnic population (in order to avoid abuse targeting at harming a specific
ethnic group)
19
© Amnon Shabo (Shvo)
Find Out More on IHRB
More details can be found
in my IHRB papers, e.g. in the Journal
“Methods of Information in Medicine”
Join the IMIA Work Group on Health
Record Banking (http://www.imia-
medinfo.org/new2/node/474 )
20
My IHRB Journey:
1998: Amnon Shabo raises the idea and founds the Bankomed
initiative, set out to establish a first experimental IHRB
1999: IHRB is the core of the Bankomed business plan, submitted to
major venture capitalists in Israel
2001: IHRB is first presented by Amnon Shabo in the TEHRE 2001
conference, November 2001, London (as IBM Research paper)
2003: IHRB is the core of the mEHR proposal made to the EC FP6 by
19 European partners (including IBM Research Lab in Haifa)
2004: HRB (Health Records Banks) is a core part of IBM Research
Strategy in Healthcare
2005: IHRB is published in IP.com
2006: IHRB Bills were introduced in the USA Congress and Senate
© Amnon Shabo (Shvo)21
The End
Thanks for your attention!
Questions?
Comments: [email protected]
Towards a universal health information language
Revolutionizing healthcare through independent lifetime health records