Crossing the Privacy-Trust Chasm in Digital Health – Are we ready to add social media data?

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In the December 20th issue of Journal of the American Medical Association (JAMA) viewpoint Dr. Freddy Abousi from Facebook shares perspective on leveraging social media data in the context of social determinants of health. Two thousand eighteen has been a turbulent year for the social media giant, and 2019 may see a plethora of new regulations and application of GDPR in the European Union. Trust has been eroded when we consider the impact of the Cambridge Analytica scandal on UK and USA elections so are we really ready to merge social media data with clinical data?

Digital health companies have been putting privacy and security protocols in place in their solutions with greater scrutiny, like the  Pre-cert program from the FDA and health care companies are also demanding it is in place before engaging. Before we add social media into the mix of these already large data sets, it may be time to develop robust standards to move the needle on privacy to rebuild trust in technology and data use akin to what the Institute of Medicine Crossing the Quality Chasm did for health care quality improvement in 2001.

Nurses the most trusted

A recent Gallup Poll shows nurses, doctors and pharmacists are the top three trusted groups (as defined by living up the ethical obligations) with Congress being the least trusted. Why would the health care profession cede this prime spot in trust to include social media giants as partners? New models of care may dictate the need for these partnerships and people share their lives of social media platforms in nuanced ways that may never show up in clinical records so the additional context may be useful for population health.

We are over a decade into smartphones, apps and social media and as we move into the tween years more transparent use of the data these technologies produce will be important to optimally leverage partnerships to support health and longevity.

Thanks for reading – Trina
(Opinions are my own)



JAMA Viewpoint

Gallup Poll on Trust


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