ILAMI Symposium on Personal Health Record April 22, 2009

1. ILAMI Symposium onPersonal Health RecordApril 22, 2009 Amnon Shabo (Shvo), PhD IBM Research Lab in Haifa

2. Agenda • PHR vs. EMR • What is an all-inclusive EHR? • What are the principle constellations for sustaining EHRs, possibly over the lifetimeof individuals? • Independent Health Records Banks (IHRBs) – the inevitable constellation and… it’s getting traction!

3. 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 

4. 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

5. Is PHR Safe?

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

7. Is the PHR Reliable?

8. 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 hospitalwhile there are other exams with positive results

9. Medical records Longitudinal (possibly lifetime) EHRA single computerized entity that continuously aggregates and summarizes the medical and health records of individuals throughout their lifetime All-Inclusive Health Record From medicine to health… content Longitu- dinal, possibly life long time source 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.) Medical recordEvery authenticated recording of medical care (e.g., clinical documents, patient chart, lab results, medical imaging, personal genetics, etc.) Cross-institutional

10. EHR – layers of temporal and summative data Topical data Summative Info Plan Disease Goal etc. Problem Event Sensitivities | Diagnoses | Medications | etc. Non- redundant data E H R Evidence Ongoing extraction and summarization Temporal Data Medical records: charts, documents, lab results, imaging, etc.

11. 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

12. Big brother Partial data Centrality in EHR sustainability models Government Centric Provider Centric e.g., UK, Denmark e.g., USA Non-Centric: Independent EHR Banks (IHRBs) e.g., Finland, The Netherlands e.g., Web sites Regional Centric Consumer Centric Non-reliable Data Limited

13. Provider Provider Provider Provider Provider Archive- Archive- Archive- Operational IT Systems Operational IT Systems Operational IT Systems Medical Records Medical Records Medical Records Operational IT Systems Operational IT Systems Standard-based Communications Standard-based Communications The Conceptual Transition Healthcare Consumer Independent Health Records Bank Independent Health Records Bank New Legislation Current constellation New constellation Figure 2: The conceptual transition from enterprise-based repositories to independent and patient-based repositories (the IHRBs).

14. 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 formultiple 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

15. IHRBs and the patient’s bill of rights • The IHRBs legislation followsthe spirit of thepatient’s bill of rights, whose main principles are: • The right to receivecopiesof your medical records • The right to havecontinuity of carewhen changing providers • The right to have asecond opinion • The right to go through aninformed consent process • IHRBs enable the true realization of the goals of the patient’s bill of rights and especially the goal ofcontinuity of care!

16. Healthcare Healthcare IHRB IHRB Healthcare Providers Consumer Consumer IHRB major business transformations Archiving costs Health plan includes IHRB account charges Health Insurers Pay per amount of storage, transactions and services

17. 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

18. 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

19. IHRB Gaining Traction!

20. 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

21. The End • More details can be foundin my latest paper on IHRB (in the “Methods of Information in Medicine” Journal) • Comments: shabo@il.ibm.com Separation of Powers 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 Checks and Balances