Citizens, Research Ethics Committee Members and Researchers’ Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems

A survey was conducted to assess citizens, research ethics committee members, and researchers’ attitude toward information consent for the secondary use of health data within learning systems (LHSs). Results show that reuse advance knowledge improve care is valued by all parties; regarding has fundamental importance particularly citizens; respondents deemed important existence a secure website support processes. This part larger project aims at exploring public perspectives on alternate approaches current models take into consideration unique features LHSs. The revised model will need ensure citizens are given opportunity be better informed about upcoming have their say, when possible, in data.