Transcript HL7 - אילא - איגוד ישראלי

ILAMI Symposium on
Personal Health Record
April 22, 2009
Amnon Shabo (Shvo), PhD
IBM Research Lab in Haifa
IBM Labs in Haifa
© IBM Corporation
IBM Labs in Haifa
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 Vision
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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 Vision
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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 Vision
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Is PHR Safe?
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PHR & the IHRB Vision
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Is “Some Information” better than “No Information”?
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PHR & the IHRB Vision
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Is the PHR Reliable?
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PHR & the IHRB Vision
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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 Vision
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Longitudinal (possibly lifetime)
EHR
A single computerized entity
that continuously aggregates
and summarizes the medical
and health records of
individuals throughout their
lifetime
content
From medicine to health…
Medical
records time
Longitudinal,
possibly
life long
Health record
Medical record
Every authenticated
recording of medical
care (e.g., clinical
documents, patient
chart, lab results,
medical imaging,
personal genetics, etc.)
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Cross-institutional
Any data items related to the
individual’s health (including
data such as genetic, selfdocumentation, preferences,
occupational, environmental,
life style, nutrition, exercise,
risk assessment data,
physiologic and biochemical
parameter tracking, etc.)
PHR & the IHRB Vision
IBM Labs in Haifa
EHR – layers of temporal and summative data
Topical data
Sensitivities | Diagnoses | Medications | etc.
Summative Info
Ongoing extraction
and summarization
Evidence
EHR
Nonredundant
data
Temporal Data
Medical records: charts, documents, lab results, imaging, etc.
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PHR & the IHRB Vision
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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

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Arguments:

involves intensive IT computing tasks and high archiving costs

might lead to ethical conflicts
PHR & the IHRB Vision
Centrality in EHR sustainability models
IBM
in Haifa
BigLabs
brother
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e.g., UK,
Denmark
Partial data
e.g., USA
Government
Centric
Provider
Centric
Non-Centric:
Independent
EHR Banks
(IHRBs)
e.g., Finland,
The Netherlands
e.g., Web sites
Regional
Centric
Limited
Consumer
Centric
Non-reliable
Data
PHR & the IHRB Vision
IBM Labs in Haifa
The Conceptual Transition
Provider
Provider
Healthcare
Archive-
Operational
IT Systems
Medical
Records
Consumer
Operational
IT Systems
Standard-based
Communications
Provider
Independent
Health Records
Bank
Archive-
Operational
IT Systems
Medical
Records
Independent
Health Records
Bank
Provider
Provider
Archive-
Operational
IT Systems
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Medical
Records
New
Legislation
Current constellation
New constellation
Operational
IT Systems
Standard-based
Communications
PHR & the IHRB Vision
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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
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any attested medical record must reside in only one IHRB account
PHR & the IHRB Vision
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IHRBs and the patient’s bill of rights

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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!
PHR & the IHRB Vision
IBM Labs in Haifa
IHRB major business transformations
Healthcare
Providers
Archiving costs
IHRB
Healthcare
Health
Insurers
Health plan includes
IHRB account charges
Consumer
Healthcare
Pay per amount of storage,
transactions and services
IHRB
Consumer
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PHR & the IHRB Vision
IBM Labs in Haifa
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 Vision
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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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PHR & the IHRB Vision
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IHRB Gaining Traction!
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PHR & the IHRB Vision
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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:

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



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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
PHR & the IHRB Vision
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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
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