Opening government health data to the public: benefits, challenges, and lessons learned from early innovators

Abstract

Objective: Government agencies are rapidly developing web portals to proactively publish "open" data that are searchable, available in nonproprietary formats, and with unlimited use and distribution rights. In this dynamic environment, we aimed to understand the experiences of 2 early leaders in open health data, the US Department of Health and Human Services and the New York State Department of Health.

Materials and methods: Semistructured interviews with 40 practitioners and policymakers elicited value propositions, capabilities required for successful open data programs, and strategies for improving impact and sustainability. Transcripts were analyzed using a grounded theory approach to identify common perspectives and divergent viewpoints.

Results: Respondents were optimistic about the value of open data, reporting numerous opportunities to advance the triple aim of lower costs, improved health care quality, and better population health. Benefits to agencies include enhanced data quality and more efficient operations. External benefits include improved health literacy, data-driven changes in health care delivery, consumer engagement, and community empowerment. Key challenges are resources, cultural resistance, navigating legal and regulatory issues, and data quality.

Discussion: The open data movement will likely continue, but success requires sustained leadership, resources, organizational cultural change, promotion of data use, and governance. Jurisdictions that are initiating open data programs can incorporate these lessons from early innovators.

Conclusions: The open data movement has a bright future but unknown long-term impact. To maintain momentum, important directions for the field include reconsidering legal guidance on protecting health data in the open data era and quantifying the return on investment.

Keywords: data curation; data sources; health policy; open data.