Eric Topol: Patients Should Own & Control their Medical Data

Posted Thursday, July 28, 2016 in Innovation by Patricia Seybold

I like the thoughtfulness of this article, recently published in Nature: Stop the Privatization of Health Data, by John Wilbanks and Eric Topol. I have culled a few highlights to give you a flavor:

Selected Excerpts below:

"Until now, obtaining health data has generally depended on highly skilled professionals who record perhaps tens to hundreds of observations in a clinic or hospital ward once or twice a year, and on researchers who painstakingly extract the relevant information from hard-to-obtain, non-standardized medical records. Now, thanks to smartphone apps — such as those created using Apple's software framework ResearchKit, launched last year — and wearable sensors that can detect gait, location, heart rate and even brain activity, analysts can draw on tens of thousands of real-time observations collected from tens of thousands of people every day, even every minute."

Yet there is a major downside to monoliths such as Google or smaller companies such as consumer-genetics firm 23andMe owning health data — or indeed, controlling the tools and methods used to match people's digital health profiles to specific services.


If undisclosed algorithmic decision-making starts to incorporate health data, the ability of black-box calculations to accentuate pre-existing biases in society could greatly increase. Crucially, if the citizens being profiled are not given their data and allowed to share the information with others, they will not know about incorrect or discriminatory health actions — much less be able to challenge them. And most researchers won't have access to such health data either, or to the insights gleaned from them.


Case study

At Sage Bionetworks, we are conducting four ongoing clinical studies on various diseases including Parkinson's. We are also providing the online interfaces for patients to upload their information, and portals to enable data sharing for a further three studies (on diabetes, asthma and cardiac health). Across these seven studies, we have enrolled more than 90,000 participants since March 2015 (see Participants have the automatic right to access and download complete copies of their own data. They also have the right to donate their data for broad reuse by 'qualified researchers', meaning those that have validated their identity, passed a short test and signed a code of ethical practice.

In our studies, more than 75% of participants elect to share their data — presumably to maximize the chances of investigators finding a way to help them and others like them. Our numbers are biased by the fact that we are surveying people who are already enrolled in clinical studies. But in a 2015 survey of a more generic US population by National Public Radio, 53% of those polled said that they would be willing to share their data anonymously with health-care professionals (see It could be transformative if even just 5% of the US population donated a copy of their health data to science. After all, it took only a small community of open-source software programmers worldwide to drive major shifts in the computing industry.


Openness is not an easy goal. Numerous interlocking systems need to be designed, including those to protect privacy, to mitigate harm caused by certain insights becoming public knowledge, and to enable people who do not wish to be phenotyped to opt out. But if the new era of digital health is accompanied by citizen-led pushes for more openness, it may not just be health care that is transformed.

Citizens worldwide have too long a history of being passive players in health care — blindly following instructions from providers. And studies that have tracked reactions to revelations about global surveillance programmes suggest that most people are resigned to the idea that ownership and control of personal information is incompatible with the Internet age3.

Yet just as social networking has rocketed around the world in a decade, a worldwide knowledge resource could soon be used to identify the best course of treatment for an individual on the basis of the experiences of millions. This resource will never be built unless each of us takes responsibility for our own health and disease, and for the information that we can generate about ourselves. When it comes to control over our own data, health data must be where we draw the line."


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