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April 2014

Geoff’s Comment

For the independent thinker.

April 2014Let patients use their own data

There has been quite a hullabaloo about patient confidentiality among commentators and different patient bodies in recent lay press coverage.

With this mini war raging, it was interesting to listen to one of the speakers at the recent Economist conference, Martin Coulter, chief executive of US patient website PatientsLikeMe. This website helps around 270,000 registered patients learn from each other, track their own health, and connect with patients who have similar profiles.

Coulter cited a recent survey it conducted with the Institute of Medicine, which showed 92% of US patients agreed with the notion of sharing their health data to advance medical research. In a similar survey by Zogby Analytics, 74% of the 1,000 US adults surveyed said they would be happy for their health data to be used for this reason.

So it would seem the problem of data sharing doesn’t lie with the patients.

Fortunately, PatientsLikeMe, and indeed the UK site, Handle my Health, are working directly with patients in this area – neatly sidestepping the hullabaloo.

In the drive for new treatments, these sites give patients back the opportunity to use their own data to improve their own lives and the lives of others. And rightly so.

Geoff Frew

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