By Mark Branning and Brad Tritle

Mark Branning is Principal at mdb Healthcare IT Solutions, Adjunct Professor at National University, a member of the HIMSS  Connected Patient Committee and co-chair of the Connected Patient Community.  Mr. Branning has spent 33 years in the healthcare information systems industry and is a consultant specializing in patient engagement, health information exchange (HIE), interoperability, and product positioning.

Brad Tritle is Global Product Owner for Chronic Disease Management at vitaphone health solutions, co-founder of eHealth Nexus, former CEO of eHealth Trust Arizona, former executive director of Arizona Health-e Connection, and has served as a consultant to ONC on patient engagement for health information exchange.  He is a member of the HIMSS Connected Patient Committee, co-chair of the Connected Patient Community, and chair of the HIMSS Social Media Task Force.

This is a cross-post of a  HIMSS blog post and it is posted here with permission. 

Though the term Consumer Mediated Exchange, which we suggest shortening to “C-ME” (see me), has only recently come into the vernacular, due to its official standing as one of ONC’s three approved forms of Health Information Exchange (HIE), but in a non-electronic way has been around for quite some time (From the Office of The National Coordinator: The Strategy for Advancing the Exchange of Health Information).  In fact, one of the authors recalls a conversation between two university students nearly 30 years ago – one a veterinary student and the other pre-med – in which the vet student made the case that a vet must be a better diagnostician than a medical doctor, as the lower animals have no way to personally share a medical history or clearly communicate symptoms!  In a way, C-ME has existed “offline” for a very long time, but here are some recent anecdotes that support its value:

• A former president of a state medical association and medical director for a multi-state health plan stated he would rather trust information provided by a patient than that provided by a physician, based on his experience with reviewing physician documentation.
• A former HHS regional director was lauded by emergency room physicians when he produced a written record of his mother’s health condition and medications.
• A US healthcare executive’s daughter studying in China was required to obtain a journal in which physicians would document any visits, but which would remain in her stewardship.
• The Patient Education protocol for the Indian Health Service medication reconciliationprocess includes the patient be asked to “provide clinicians with a copy of their complete medication profile anytime there is a transition of care.”

The US is moving forward with enabling the viewing, downloading and transmission of health data by patients, as part of the Meaningful Use requirements, and together with the momentum around Blue Button/Blue Button +  this will further enable C-ME.  Yet, once a patient has access to this data, how should it be organized?  Where should it be stored?  How should it be shared?  Could a suitable solution be used for other forms of Patient Generated Health Data (PGHD), and even be a secure location for a patient’s mapped genomic and associated data? Can it be used by apps of the patient’s or authorized provider’s choosing to create more value to the patient? The answer to most of the basic question was conceived and agreed-to seven years ago by two think tanks that are hard pressed to agree on anything healthcare-related:  The left-leaning Progressive Policy Institute and the right-leaning Heritage Foundation.  These two organizations supported a bill in Congress that had bipartisan support entitled “the Independent Health Record Trust Act of 2007.” Today, the original policy analysts for these organizations remain steadfast in their support of this concept as members of the Health Record Banking Alliance Advisory Board (HRBA), together with HIMSS Vice President Tom Leary and other leaders and chaired by Ted Shortliffe, MD, PhD, the former president and CEO of the American Medical Informatics Association (AMIA).  Yes, both authors of this blog are very involved with HRBA, also.

What is an independent health record trust/bank?

A health record bank (HRB) or trust is an independent organization that provides a secure electronic repository for storing and maintaining an individual’s lifetime health and medical records, obtained from multiple sources, and assuring that the individual controls who accesses the records.

The non-profit HRBA has issued white papers on business models, technical architecture, and researched how traditional HIEs that may be struggling with business models or technical scalability might migrate to a more sustainable model using C-ME.  The technical architecture also facilitates the building and authorizing of apps that could interact with the data, opening a new marketplace for valuable provider and patient Health 2.0 tools that facilitate engagement, patient activation, and financial sustainability.

Lessons learned from one health record banking startup were recently published in the February 2014 issue of Methods of Information in Medicine. The community of supporters, which includes the authors and many HIMSS members, recognizes the perfect model has not yet been implemented, though several suggested models await implementation.  Could this be the cure to the lack of a true longitudinal medical record, and a tool enabling much more personalized patient engagement?

Should Congress reconsider establishing such a regulated, bank-like infrastructure (with opportunities for multiple technical infrastructure vendors) that also facilitates value creation as shown by the SMART Platform work funded by HHS (www.smartplatforms.org)?

With more opportunities for consumers (patients) to view or obtain their health information from separate “silos,” including genomic mapping and associated disease risk data, and the need to organize and share Patient Generated Health Data with physician/hospital EHRs, the timing has never been better to consider even better options for C-ME facilitation.

How do you think Independent Health Record Trusts could be established and implemented ?