The ethical implementation of the learning health care system (LHS) should consist of patient representation on governing boards, transparency, and strict oversight of for-profit users (JCO Oncol Pract. 2020;OP2000454. doi:10.1200/OP.20.00454).
The LHS was designed to allow real-time learning and research by gathering data from patient clinical encounters, but ethical questions about the use of patient data and patients’ viewpoints remain.
Researchers conducted democratic deliberation sessions focused on the real-world LHS, CancerLinQ. Discussions about whether policies should permit or deny certain users and the use of secondary data took place.
Participants voiced concerns and expectations about LHS. They expected to gain medical knowledge from LHS, which they could use to improve treatments and the quality of care. Patients were concerned that users might manipulate the data for the goal of earning profit while causing burdens and exploiting patients. Recommendations to prevent the misuse of data include restricted access, user fees, and penalties. Patients should also receive notification of potential ethical issues and be included on governing boards.
“If patients are to trust and support LHS endeavors, their concerns about for-profit users must be addressed,” concluded the study authors. “The ethical implementation of such systems should consist of patient representation on governing boards, transparency, and strict oversight of for-profit users.”—Lisa Kuhns
