Year of the participant: Brought to you by Apple’s ResearchKit

This is emerging as a glorious week – really a glorious year — for patient empowerment, and for participatory science.

The opening salvo, perhaps, was the publication of Eric Topol’s The Patient Will See You Now, offering the perspective of a “techno-optimist” (his term) on the disruptive potential of the smart phone specifically, and technology more generally (my Wall Street Journal review here).

Next, we watched Congressional committees struggle to come to terms with the inherent lack of interoperability and data accessibility within healthcare – a problem painfully captured by New York Times reporter Elizabeth Rosenthal as she described a patient’s attempts to access his own medical records.

While the Congressional debates tended to focus on the electronic medical records (EMRs) themselves, it has become abundantly clear to almost everyone that medical centers, including (some would say especially) academic medical centers are not especially inclined to share data, as the difficulty of exporting data is often viewed by executives as a competitive advantage, as I noted here.  To their credit, many in Congress have recognized the problem of interoperability (e.g. Bill Cassidy), and have noted the adverse implications for precision medicine (e.g. Lamar Alexander) (note both links = PoliticoPro eHealth/$).

On the other hand, many attendees at this year’s HIMSS health technology meeting were surprised that this once-dreary event had been revitalized with the focus swinging away from platforms and towards patients, as nicely captured by my Tech Tonics collaborator Lisa Suennen here.

This year has also brought us a captivating, innovative genetics project called Genes For Good (see this nice article by Buzzfeed’s Virgina Hughes), where a team of researchers from the University of Michigan utilize Facebook to recruit and engage participants in a study of health behaviors and (if a spit-kit is returned) genetics.  The study returns to participants not only ancestry information but also the raw data (or more precisely, a slightly processed file called a VCF containing a list of detected variants) because, as the investigators write, “although research studies traditionally have not returned raw genetic information to participants, we believe you have the right to your information.”

Which brings us to this week, which has featured two breathtaking articles about Apple’s new ResearchKit, a platform that essentially turns Apple devices into trusted middleware (to borrow BIDMC CIO John Halamka’s apt term) that can integrate data obtained from a range of devices.  David Pogue, writing at Yahoo, does a better job than anyone I’ve seen of capturing the potential of ResearchKit to measure medically-relevant phenotypes using digital health technologies, while Antonio Regalado breaks the story in Technology Review that ResearchKit might also be used to capture genetic data as well.  In both cases, Apple wouldn’t own or apparently even be able to access the data; their goal seems to be to operate at the center of a vital health ecosystem that places the patient front and center.

The most important enabling “technology” for ResearchKit – and for participatory research more generally – may well be the forward-thinking eConsent form developed by John Wilbanks and his colleagues at Sage Bionetworks, a non-profit organization that also provides a trusted data sharing and collaboration platform for several ResearchKit-associated apps.  (Disclosure: I was a founding advisor of Sage, but have no financial associations with the organization – though I continue to strongly support their open science mission.  As a reminder, I’m also Chief Medical Officer of DNAnexus, a genomic data management platform.)

The key limitation to the sort of patient-led change Sage and others have long advocated has traditionally been the difficulties of scaling – the challenges of getting beyond the ultra-engaged quantified selfers and the severely afflicted patients (and associated stakeholders).  ResearchKit (in partnership with Sage) offers the possibility of changing this, and bringing participatory research to the masses (those with an iPhone, anyway), and extracting at least a measure of control from the medical centers who have dominated it in the past.

I’ve been struck by the traction participatory science has already attracted, as it’s become increasingly clear to everyone from pharma companies to patient advocacy groups that medical centers may no longer be the only game in town, the gateway through which all robust patient information must inevitably pass.  Even many academic researchers – frustrated by the often byzantine processes that dominate their own institutions – seem excited, nay delighted, by the changes that seem to be in the offing.

Expect the transition of power to be tumultuous, as threatened incumbents seek to retain the control to which they’ve grown accustomed, and as participants acclimate to the challenges and responsibilities associated with asserting data ownership.

But this adjustment, difficult as it will be, is also going to be one for the best, as I expect participants will be far more likely to share their data than academics might be, resulting in the opportunity for profound new insights that can help patients immediately (perhaps by connecting two families trying to cope with extremely rare genetic conditions), as well as contribute to the rich integrated data sets likely to drive profound scientific advances in the future.

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