Ethics and Learning Health Care: The Essential roles of engagement, transparency, and accountability

Extraordinary innovation in medicine promises vast improvements to the health of individuals and communities. Yet it is a lost opportunity that data from most medical care is never aggregated or analyzed. Even when data are aggregated and analyzed, most of this “learning” is never translated into improved practice. The Learning Health Care System (LHCS) is a response to both of these challenges. Ethically, the LHCS relies on a foundational understanding between patients and their health systems in which patients endorse the use of their data for ongoing learning, and health systems commit to improving care based on what is learned. We have outlined elsewhere a set of seven ethical obligations for Learning Health Care, including the obligation to respect the rights and dignity of patients. In this paper, we suggest that three specific respect-promoting actions are morally required in a LHCS: engagement with patients about ongoing learning activities, transparency with patients about ongoing learning activities, and accountability in implementing what is learned.