In 2014, I had the chance to listen to Herb Quinde, the then-Public Sector Director at Microsoft, espouse the potential in a national health identification (ID) card—a “health care rap sheet” that would have a basic, standard set of critical information about each U.S. citizen (see Stop Integrating Data & Start Liberating Data and The Health ID Card: A Double-Edged Sword). One of the goals of his plan was to unify what the health care field was measuring and make those measures “ubiquitous” to every health care interaction. In 2016 (see The Quest For The HHS “Golden Record”), he expanded on this idea, putting it this way:
Could a standardized single summary HHS record with simply a subset of the recipient’s demographic and programs history information, with all the baked-in security and confidentiality, be a critical element of interoperability and information-sharing?
Truly portable personal health records have not happened in the U.S. Big players—like tech giants Microsoft and Google—have both tried and failed (see Microsoft To Retire Its Health Service In November and Google Health Fades to Black). I am a big believer in being the “captain” of your own health information and was an earlier adopter of these tools. But I can tell you that neither was easy to use. I had to request my records from all my various health care professionals, from over my lifetime. Those records arrived in various formats—usually PDFs of faded copies of paper records. Then, I had to type them into my online record account. These were not solutions for people looking for an “easy” way to aggregate their personal health information.
Last year, the Centers for Medicare & Medicaid Services (CMS) final rule for the Medicare and Medicaid Promoting Interoperability Programs emphasized measures that require the exchange of health information between provider organizations and consumers; this was followed up in February by a proposed rule that requires health plans to provide members with immediate electronic access to medical claims data and other electronic health information (EHI), such as diagnoses, procedures, tests, and the participating provider organizations/clinical professionals (see New Consumer Rights To Data = New IT Challenges).
That is all good, but not the same as consumers owning their data and having an easy way to have all their records in one place, at one time.
But the issue of the personal health record is resurfacing again. In an interview last month, Barbara Casey, Global Healthcare & Life Sciences Leader at Cisco said one of the best ways to improve the U.S. health care system would be to establish a “personal health record” (see Barbara W. Casey of Cisco Systems, Inc: “Why We Should Establish a Personal Health Record For Each Person In the U.S.”). She didn’t expand on the details, but noted these records could be supplied by either public or private means, and that consumers would own and manage the data (including how it is used and collected, and by whom).
One of the impediments to the nationally-sponsored personal health record is a vestige of the debate over the Patient Protection & Affordable Care Act (PPACA). The U.S. health care system almost had this kind of approach—the Health Insurance Portability and Accountability Act (HIPAA) required each consumer have a unique health identifier (UPI), which Congress then banned due to privacy concerns. But prominent voices are calling for a change. John Halamka, M.D., Chief Information Officer at Beth Israel Deaconess Medical Center and David Bates, M.D., Senior Vice President and Chief Innovation Officer at Brigham and Women’s Hospital wrote in an NEJM Catalyst op-ed last year, calling for a lift on the UPI ban (see Has The Time Come For A Unique Patient Identifier For The U.S.?), noting:
When accurate information is attached to the right patient, data access is timelier for clinical, administrative, quality improvement and research purposes; inappropriate care, redundant tests and medical errors are reduced; and health information exchange becomes easier-within organizations as well as between.
I think that having a portable, universal personal health record for consumers would be great for consumers and clinical professionals alike. Having access to all health information in one place at one time has the potential to greatly improve consumer care—and decrease costs at the same time. For managers of provider organizations and health plans, addressing the interoperability issue will be the key challenge. But, a mandate that “solved” the interoperability question once and for all would be a strategic plus for specialty provider organizations.
We’ll continue cover the regulatory and legislative initiatives that are shaping health care information infrastructure. In the meantime, check out these resources from the OPEN MINDS Circle Library:
- How Can We Improve Behavioral Health Data Exchange? The Challenges & The Opportunities Of HIE
- Without HIE, Participation In ACOs Is Limited
- HIE – In The Works In Los Angeles
- Stop Integrating Data & Start Liberating Data
- HIE Not Only Improves Efficiency – It Saves Lives
- HIE 3.0?
- ‘Person-Centered’ Health Care Records Take Center Stage
- CMS Shifting Data Control To Consumers: Are You Ready To Share?
- Health Information Exchange-Can Work, Isn’t Working
- For Successful ‘Integration’, It Takes Interoperability & Patience
And be sure to mark your calendar for October 28-30, when we will host The 2019 OPEN MINDS Technology & Informatics Institute at the Loews Philadelphia Hotel. This year’s institute will focus on tech tools executive teams needs to move their organization from the concept of value-based reimbursement, to success in the new financial normal.