Opening Health Data: What Do Researchers Want? Early Experiences With New York's Open Health Data Platform

摘要

Context: Governments are rapidly developing open data platforms to improve transparency and make information more accessible. New York is a leader, with currently the only state platform devoted to health. Although these platforms could build public health departments' capabilities to serve more researchers, agencies have little guidance on releasing meaningful and usable data. Objective: Structured focus groups with researchers and practitioners collected stakeholder feedback on potential uses of open health data and New York's open data strategy. Setting and Design: Researchers and practitioners attended a 1-day November 2013 workshop on New York State's open health data resources. After learning about the state's open data platform and vision for open health data, participants were organized into 7 focus groups to discuss the essential elements of open data sets, practical challenges to obtaining and using health data, and potential uses of open data. Participants: Participants included 33 quantitative health researchers from State University of New York campuses and private partners and 10 practitioners from the New York State Department of Health. Results: There was low awareness of open data, with 67% of researchers reporting never using open data portals prior to the workshop. Participants were interested in data sets that were geocoded, longitudinal, or aggregated to small area granularity and capabilities to link multiple data sets. Multiple environmental conditions and barriers hinder their capacity to use health data for research. Although open data platforms cannot address all barriers, they provide multiple opportunities for public health research and practice, and participants were overall positive about the state's efforts to release open data. Conclusions: Open data are not ideal for some researchers because they do not contain individually identifiable data, indicating a need for tiered data release strategies. However, they do provide important new opportunities to facilitate research and foster collaborations among agencies, researchers, and practitioners.