Facilitating health data sharing across diverse practices and communities

Health data sharing with and among practices is a method for engaging rural and underserved populations, often with strong histories of marginalization, in health research. The Institute of Translational Health Sciences, funded by a National Institutes of Health Clinical and Translational Science Award, is engaged in the LC Data QUEST project to build practice and community based research networks with the ability to share semantically aligned electronic health data. We visited ten practices and communities to assess the feasibility of and barriers to developing data sharing networks. We found that these sites had very different approaches and expectations for data sharing. In order to support practices and communities and foster the acceptance of data sharing in these settings, informaticists must take these diverse views into account. Based on these findings, we discuss system design implications and the need for flexibility in the development of community-based data sharing networks.