Gene Editing
Opinion: Needed: a new framework to make sure health companies play fair with patient data
As a health policy wonk and health economist who has worked in pharmaceutical companies in the United States, Latin America, and Europe, I’ve seen vast volumes of data generated, gathered, aggregated, analyzed, shared, and resold by health care companies and organizations. In my studies with the world’s top medical statistics experts at the University of Oxford’s Centre for Evidence Based Medicine, I’ve also seen how flawed many datasets are, missing critical data pieces and definitions, and yet still used by the industry to make key decisions.
I’m now more certain than ever that patients are being seriously exploited in terms of their data, its value, and the profitability others are deriving from its aggregation and sale — though some are beginning to realize just how valuable their health data can be. They should be able to bank that value.
