Health Data Ownership, Control Gain Momentum

Health data control has been a hot topic in the last month. A wonky healthcare topic is almost mainstream.

It started with a few tweets. Billionaire NBA Dallas Mavericks team owner and Shark Tank shark Mark Cuban recommended people who can afford to pay for them should get quarterly blood tests.

This instantly started a very public and enthusiastic debate. Dan Munro has a good write-up of how this debate played out in social media, clarifying the arguments made on both sides.  The discussions continue as Cuban has continued the conversation this week on twitter around evidence-based medicine. Follow @mcuban to see the latest.

Quick synopsis: The medical establishment was less than enthusiastic about Cuban’s suggestion. Didn’t Cuban know that “over-testing” leads to needless worry and unnecessary treatment? That current state of medical knowledge could do little with all that data?  That tests were often flawed?

Cuban did know these things and was tentatively backed by technology-oriented healthcare professionals, writers, data scientists and others, including Matthew Holt of Health 2.0 and The Health Care Blog.

Cuban’s nuance was pre-clinical (at home, in private) data context vs clinical and treatment contexts. Cuban was not suggesting that the data collected would be actionable; he merely suggested that having the data – collecting, owning and controlling it – was better than not having it. Perhaps it would be useful at some point as a baseline.

Many physicians did not see the nuance, seeing the world from the clinical context. In that context a data point is often a decision point.

Our position: We here at UnPatient believe people have a right to access to this data if they want it and can pay for it. In that sense, we agree, but we’d never make a recommendation on how often, or even if someone should get tested for anything. Our hope is that long-term, the more data we have, we’ll have a clearer understanding of what tests can and can’t tell us.

Meanwhile, the annual HIMSS conference began this week in Chicago and another personal health data firestorm erupted when it was discovered that CMS may be pulling back from Meaningful Use incentives around providing patients access to their health records. In response, former National Coordinator for HealthIT, Dr. Farzad Mostashari spoke out at HIMSS calling for a national day of action, where individuals would ask for their health records. Regina Holiday and other patient advocates are setting a date for this summer, and we’ll certainly support a day to access personal health data.

 

We’ll share more on this as we learn more.

A social media discussion of health data ownership on twitter surrounded Mostashari’s talk and included people such as Eric Topol. Even if it’s nearly impossible in practice to access one’s health record, Mostashari stated that people already have the rights they need to get the data they want, and just need to demand the rights they have. Others have begun to call for more specific ownership rights.

 

 

What additional controls and rights might be needed will become a hot topic as more clinical research data is captured directly from consumers via projects like Apple’s ResearchKit and individuals have wider access to testing through companies like Theranos.

Other big news from the HIMSS event, IBM Watson announced a partnership with J&J, Apple and Medtronic to make better sense of health data. Watson will be integrated into iPhone HealthKit apps, for instance. This suggests that health data, backed by powerful analytics will be very big business in the months and years to come.  Several companies at HIMSS announced plans to provide apps for the Apple Watch, with nearly continuous monitoring, and looks to have more rapid adoption in health care than even the first iPhone. Apple Watch announcements were a dominant theme this year. Questions of ownership and access will continue to arise, particularly as health data breaches continue to become a problem.

(Photo: David Baratz, USA TODAY)

The breadth and impact of the latest  health data breach, 79 million records from Anthem, is well-documented by Charles Orenstein of ProPublica (who coincidentally, was one of the many taking Mark Cuban to task over lab testing).  Many interviewed, like Rebecca Fayed, privacy officer for The Advisory Board Co.,  didn’t even know that Anthem had any sensitive data about them until receiving letters disclosing the breach.

This culmination of events (testing, access, ubiquitous sensors, security) raises fundamental questions: As multiple third parties begin to understand the value of this health data, collect personal health data and sell health data, how can we ensure it’s safe? Or do we need a new model for collecting and storing it?

Even as all this data becomes widespread among third parties, it’s often impossible for the individuals themselves to access it.

And what’s it worth to the individual? Sometimes it’s priceless. There was a great story in the NYTimes about an MIT Ph.D. student who pushed to access and make sense of his own health data with incredible results, detecting a brain tumor.

The “UnPatient” concept was written up by Bruce Friedman of Lab Soft News as an idea “who’s time had come.” As more data becomes available, data will continue to become more valuable, and we’ll need better ways to measure and control how it’s used.

Like so much else in American healthcare, control of health data seems like it was designed to be difficult, but we’re optimists and believe that, with the help of some new technologies, many problems related to data control in healthcare can be solved. Stay tuned.

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We’ll have a lot more to say about legal/regulatory issues in health data next month, but for now we’ll just note that a complex patchwork of federal and state regulations and laws govern the control of data related to human health and illness, so here’s a great chart until then, hat tip to Sherry Reynolds (@Cascadia).