We are proud that one of our Board of Directors of Patient Privacy Rights, Latanya Sweeney, PhD, is leading this major project that puts patients in control of the collection and use of sensitive personal health information in a very secure ‘health bank’. No information can be disclosed without the patient’s informed consent.
Health banks can enable health information to exchange data for treatment and other uses WHEN patients say so, instead of the way today’s electronic systems operate: millions of employees of “covered entities” like hospitals and hospital chains, clinics, doctor’s offices, health plans, and health clearinghouses decide when to use, sell, or disclose patients’ health information for a myriad of reasons without obtaining informed patient consent or giving advance notice.
Today, Americans have no idea which parts of their sensitive personal health data is being disclosed to whom or for what purposes. Moving to a health banking system would put patients back in charge of records, not corporate and government users, or researchers.
PPR is working with Professor Sweeney and her lab on a complementary project to map where health data flows. Patients cannot weigh the risks of using electronic health systems without knowing where their data goes and who is using it. Professor Sweeney will unveil the PPR/Harvard Data Privacy Lab Health Data Map on June 6th in DC at the 2nd International Summit on the Future of Health Privacy. Registration to attend or watch via live-streamed video is free.