Making the case for personal health data sharing

Despite the security risks, we all have a responsibility to help advance medicine by sharing our health data, Beth Seidenberg, M.D., writes at Wired.

Seidenberg, a partner at Kleiner Perkins Caufield & Byers, which focuses on life science investing, says de-identified data is driving the most important advancements in medicine: population-based data discoveries and health-management tools.

She doesn't downplay the seriousness of proliferating breaches in healthcare, including the one at Tennessee-based Community Health Systems, in which the information for 4.5 million patients was accessed, but appeals to the greater good that is achieved by sharing data.

"These problems are real, and we have to solve them," she writes. "But they should not impede the advances in healthcare on the horizon. The next big breakthrough in medicine could develop because you shared your health information. All of us--patients, providers, and entrepreneurs--have a stake in making this happen."

The Institute of Medicine has argued in a paper that information on everyday doctor visits can be used to improve care for everyone.

"We are missing a tremendous opportunity to turn our healthcare system into one that learns from each care experience and leads to better and more affordable care for all," said Michael D. Murray, the Regenstrief Institute investigator and Purdue University professor who was lead author on the IOM paper.

PatientsLikeMe, an online community for people with chronic diseases, also has launched a social media campaign to promote the benefits of sharing health information.

However, Department of Veterans Affairs Chief Information Officer Stephen Warren recently said one of his biggest fears is that the proliferation of breaches will undermine the public's trust in online systems, but also reiterated the benefits on big data on healthcare. 

"The privacy laws are not perfect. No system is fail-safe. More breaches will happen. But let's not let the perfect be the enemy of good. Big data will enable you to make better decisions and, at the population level, will lead to new insights, new discoveries, and better health for everyone," he said. 

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