Viewpoint: Privatized data contributes to health inequities, slow scientific progress

Running parallel to the rise in tech and digital health companies is the growth of user-level data. This health information is seen as a treasure chest for researchers and scientists seeking insights for advances, but the data often becomes private, or held in "closed loop" systems that threaten fair, progressive use of the data, according to a paper in the journal Nature written by Eric Topol, MD, professor of genomics at La Jolla, Calif.-based Scripps Research Institute, and John Wilbanks, chief commons offer at Sage Bionetworks.

"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," they write. "Now, thanks to smartphone apps…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."

But most of this information becomes privatized. Users are even often unable to access data about themselves, the authors write. This lack of transparency is problematic for numerous reasons, one reason being it can be used in discriminatory ways. The authors mention how Google's job posting algorithm was found to recommend lower paying jobs to females and higher paying jobs to males. 

Such implications extend into the healthcare arena. "It is not hard to picture a future in which companies are able to trade people's disease profiles, unbeknown to the patients. Or one in which health decisions are abstruse and difficult to challenge, and advances in understanding are used to aggressively market health-related services to people — regardless of whether those services actually benefit their health," according to the authors. 

Instead, the authors call for open projects where individuals are motivated and willing participants in sharing their data. They say the private sector plays an important role in this vision. "But private capital will better serve public interests if at least some layers of the emerging health-research infrastructure are open," the authors write.

More articles on data:

Looking to embrace population health? Focus on your people, process, and technology 
A new Amazon for healthcare: Personalized recommendations from health companies 
Family disease not just genetic — shared behavior may play key role 

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