Taking a New Look at the Lamented Personal Health Record: Flow Health’s Debut

Posted on June 8, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

After the disappointing lack of adoption suffered by Google Health and Microsoft HealthVault, many observers declared personal health records (PHRs) a non-starter, while others predicted that any progress toward personal control over health data would require a radically new approach.

Several new stabs at a PHR are emerging, of which Flow Health shows several promising traits. The company tries to take advantage of–and boost the benefits of–advances in IT standards and payment models. This article is based on a conversation I had with their general counsel, David Harlow, who is widely recognized as the leading legal expert in health IT and health privacy and who consults with companies in those spaces through the Harlow Group.

Because records are collected by doctors, not patients, the chief hurdle any PHR has to overcome is to persuade the health care providers to relinquish sole control over the records they squirrel away in their local EHR silos. Harlow believes the shift to shared risk and coordinated care is creating the incentive for doctors to share. The Center for Medicare & Medicaid Services is promising to greatly increase the role of pay-for-value, and a number of private insurers have promised to do so as well. In short, Flow Health can make headway if the tangible benefit of learning about a patient’s recent hospital discharge or treating chronic conditions while the patient remains at home start to override the doctor’s perception that she can benefit by keeping the patient’s data away from competitors.

The next challenge is technically obtaining the records. This is facilitated first by the widespread move to electronic records (a legacy of Meaningful Use Stage 1) and the partial standardization of these records in the C-CDA. Flow Health recognizes both the C-CDA and Blue Button, as well as using the Direct protocol to obtain records. Harlow says that FHIR will be supported when the standard settles down.

But none of that is enough to offer Flow Health what the doctors and patients really want, which is a unified health record containing all the information given by different providers. Therefore, like other companies trying to broaden access to patient data, Flow Health must deal with the problem that Dr. Eric Topol recently termed the Tower of EMR Babel. They study each format produced by different popular EHRs (each one using the C-CDA in slightly incompatible ways) and convert the data into a harmonized format. This allows Flow Health to then reconcile records when a diagnosis, a medication list, or some other aspect of the patient’s health is represented differently in different records.

What’s next for Flow Health? Harlow said they are preparing an API to let third parties add powerful functionality, such as care coordination and patient access from any app of their choice. Flow Health is already working closely with payers and providers to address workflow challenges, thus accelerating the aggregation of patient health record data for access and use by clinicians and patients.

A relative of mine could have used something like Flow Health recently when her eye doctor referred her to the prestigious Lahey Clinic in the Boston area. First of all, the test that led to the referral had to be repeated at the Lahey Clinic, because the eye doctor did not forward test results. Nor did anyone provide a medication list, so the Lahey Clinic printed out a five-year old medication list that happened to hang around from a visit long ago and asked her to manually update it. There was also confusion about what her insurer would cover, but that’s a different matter. All this took place in 2015, in the country’s leading region for medical care.

It seems inevitable that–as Flow Health hopes–patients will come to demand access to their medical records. A slew of interesting experiments will proliferate, like Flow Health and the rather different vision of Medyear to treat health information like a social network feed. Patient-generated data, such as the output from fitness devices and home sensors, will put yet more pressure on health care providers to take the patient seriously as a source of information. And I’ll continue to follow developments.