JAMA: A case for community health record banks

JAMA

Dr. Bill Yasnoff, our friend from the Health Record Banking Alliance, co-wrote a Viewpoint article in this week’s Journal of the American Medical Association. It says personal clouds specializing in health records are a better path for “Putting Health IT on the Path to Success” [paywall]. The many isolated pockets of patient data held across every service point creates a system that:  

  • Is complex and expensive.
  • Is prone to error and insecurity. 
  • Increases liability.
  • Isn’t financially sustainable. 
  • Can’t protect privacy as patients define it. 
  • Can’t ensure stakeholder coöperation. 
  • Can’t facilitate robust data searching, 

He argues that health information exchanges (HIE), systems for moving the electronic health records among providers, can’t solve these problems. 

Bill advocates for regional community-based Health Record Banks. HRBs store copies of all your medical records in one place, under a patient’s control. Instead of the HIE many-to-many architecture, HRBs provide single authoritative source for each patient. By being relatively local, they have more opportunities and better incentives for integration with local health care providers. 

Side effects of this simpler architecture are a more complete and accurate picture of the patient, better HIPAA compliance, more patient awareness and engagement, and built-in business models that shift these records from a costly drag to financial self-sufficiency. 

The viewpoint’s call-to-action: 

The idea of HRBs is not new. What is new is appreciating how HRBs can help achieve the HIT [health information technology] vision while most current HIE pursuits cannot. It is time for physicians to insist that HIT be pursued with realistic, achievable, and measurable goals that will produce readily available, comprehensive electronic records that can actually improve patient care. To do so requires implementation of model health record banks and then refinement of those models to allow them to achieve the sustainability and scalability that have prevented the success of distributed HIEs. Otherwise, HIT may become its own sociopolitical, legal, and economic disease.

For me, the timing is right to make this case. To date all the money’s been behind HIEs; they are the typical massive centralized IT project that looks simple on paper but fails to scale despite billions of dollars in software R&D. HRBs, as an alternative, offer proven execution advantages. Regional starts mean it’s easier to reach critical mass, community by community. Smaller scale to start means lower technology risk and faster learning. Increased patient control and engagement may even offer better clinical outcomes. Congratulations to Doctors Yasnoff, Latanya Sweeney, and Edward H. Shortliffe on the article.   

About Phil Wolff

Phil Wolff is strategy director of PDEC, the Personal Data Ecosystem Consortium, a Small Data NGO. Wolff is a director of the DataPortability Project and co-author of the project's model Portability Policy. He's had management, technology, and marketing roles at Adecco SA, LSI Logic, Bechtel National, Wang Laboratories, Compaq Computer, the City of Long Beach, the State of California, and the U.S. Navy Supply Systems Command. On LinkedIn, ORCID 0000-0002-7815-4750, Quora top 250 of 2012. He holds the PDQ Bach Inauthentic Identity Fellowship at the University of Southern North Dakota at Hoople. Phil lives in Adams Point, Oakland, California.

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