IBM Labs in Haifa © IBM Corporation ILAMI Symposium on Personal Health Record April 22, 2009 Amnon...

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 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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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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Is PHR Safe?

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Is “Some Information” better than “No Information”?

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Is the PHR Reliable?

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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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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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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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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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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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NewLegislation

Operational IT Systems

Provider

MedicalRecords

Archive-

IndependentHealth Records

BankOperational IT Systems

Provider

MedicalRecords

Archive-


Provider

MedicalRecords

Archive-

IndependentHealth Records

Bank

Standard-basedCommunications


Provider

Standard-basedCommunications


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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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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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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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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IHRB Gaining Traction!

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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

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