Learning Health Care Systems, Patient Privacy, and the Common Good: Are we asking the right questions?
Learning health care systems (LHCS) propose to advance health care by taking advantage of increasing efficiencies in data collection and analysis and information dissemination. A major premise of LHCS is broad and continuous access to patient data, extracted at the point of care, and stored and used primarily in de-identified form. Bioethicists debate whether patients should accept reduced privacy of health care data as a condition of benefitting from LHCS or whether explicit agreement by patients to the use of their health care information remains essential. The talk will expand on these points and raise questions about how the bioethics debate has interpreted recent studies on patient attitudes concerning sharing health care information.