IBM Labs in Haifa © IBM Corporation
ILAMI Symposium on
Personal Health Record
April 22, 2009
Amnon Shabo (Shvo), PhD
IBM Research Lab in Haifa
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PHR & the IHRB Vision2
Agenda
PHR vs. EMR
What is an all-inclusive EHR?
What are the principle constellations for sustaining EHRs, possibly over the lifetime of individuals?
Independent Health Records Banks (IHRBs) – the inevitable constellation and… it’s getting traction!
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PHR & the IHRB Vision3
PHR versus EMR
PHR – patient-controlled (owned?) record Patients add data, create data and correct/delete data
EMR – the traditional healthcare provider-created records Patients have no access to the complete records
NEJM Recent Article: “Your Doctor’s Office or the Internet? Two Paths to Personal Health Records”
Tang and Lee / March 26, 2009 Distinguish between “stand-alone PHR” and “Integrated PHR”* Recommends the use of Integrated PHR
as an extension of the EMR or “portals” into the EMRs Offer patients resources as providers are willing to permit
* Also called “tethered PHR”; dictionary::tethered:: fasten with a tether, tie an animal with a rope or chain in order to restrict movement
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PHR & the IHRB Vision4
Integrated PHR per the NEJM Article
Provide physicians and patients a way to create a shared record create a shared treatment plan
In the absence of widely adopted data standards, a stand-alone PHR cannot accept data and preserve its meaning
There is no federal protection of confidentiality to the health information stored in stand-alone PHRs because their operators are not “covered entities” as defined by HIPAA
Business model: “fee-for-service” in healthcare is weak integrated EHR can promote “non-visit-based” care that cut costs
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PHR & the IHRB Vision8
Another Example: Periodical Check-up
Pros: Keep track of data along the years – kind of a PHR
Typically – annual and funded by employer or insurer
Excellent idea for prevention and early detection
Cons: Is not aligned with the other HRs in HMOs, hospital, etc.
Might lead the primary physician to wrong conclusion Get only the negative results of gastroscopy available at the hospital
while there are other exams with positive results
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PHR & the IHRB Vision9
Medicalrecords timeco
nten
t
sour
ce
From medicine to health…
Longitu-dinal,possiblylife long
Cross-institutionalMedical record
Every 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
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PHR & the IHRB Vision10
EHR – layers of temporal and summative data
Temporal Data
Summative Info
E H
R
Evidence
Sensitivities | Diagnoses | Medications | etc.Dis
ease
Proble
m
Event
Plan
Goalet
c.
Medical records: charts, documents, lab results, imaging, etc.
Topical data
Non-
redundant
data
On
go
ing
ext
ract
ion
an
d s
um
mar
izat
ion
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PHR & the IHRB Vision11
Given the need for EHR, the challenge is - EHR sustainability!
Who is capable of sustaining longitudinal EHRs?
Possibly throughout the lifetime of its subjects?
Main assertion:
None of the existing players in the healthcare arena can, or should, sustain lifetime EHRs
Arguments: involves intensive IT computing tasks and high archiving costs
might lead to ethical conflicts
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PHR & the IHRB Vision12
GovernmentCentric
ProviderCentric
ConsumerCentric
Non-Centric:IndependentEHR Banks
(IHRBs)
RegionalCentric
Ce
ntr
alit
y in
EH
R s
ust
ain
ab
ility
mo
de
ls e.g., UK,
Denmark
e.g., Finland,
The Netherlands
e.g., USA
e.g., Web sites
Big brother Partial data
LimitedNon-reliable
Data
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PHR & the IHRB Vision13
NewLegislation
Operational IT Systems
Provider
MedicalRecords
Archive-
IndependentHealth Records
BankOperational IT Systems
Provider
MedicalRecords
Archive-
Operational IT Systems
Provider
MedicalRecords
Archive-
IndependentHealth Records
Bank
Standard-basedCommunications
Operational IT Systems
Provider
Standard-basedCommunications
Operational IT Systems
Provider
The Conceptual Transition
Current constellation New constellation
Healthcare
Consumer
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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
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
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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!
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PHR & the IHRB Vision16
IHRB major business transformations
Archiving costs
Pay per amount of storage,
transactions and services
Health
Insurers
Health plan includes
IHRB account charges
Healthcare Providers IHRB
IHRB
Healthcare
Consumer
Healthcare
Consumer
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PHR & the IHRB Vision17
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
Based on proper patient consent, truly anonymized data could be made available to public health agencies, clinical research institutes, and pharmaceutical companies
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PHR & the IHRB Vision18
IHRB Bills were introduced in the US!!
Independent Health Record Bank Act of 2006 (70 Congress members co-sponsored the bill):
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
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HRBs Getting Traction…
Health Record Banking Alliance: HRB systems around the country are off and running, With President Obama’s commitment for all Americans to have
electronic health records, HRBs stand to play an important role in reaching that goal
Examples: Washington State Health Care Authority Oregon Dept. of Human Services’ Medical Assistance Programs division Louisville Health Information Exchange Kentucky will develop a statewide health information exchange (RFP) In Kansas City, Mo., CareEntrust, a nonprofit, employer-based organization Florida’s Marion County - Integrated Community Health Information System
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The End More details can be found
in my latest paper on IHRB (in the “Methods of Information in Medicine” Journal)
Comments: [email protected]
IHRB History:
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
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 US