The evolution of health data ecosystems: An international survey

Abstract

This paper reports the findings of an international survey of health data ecosystems (HDEs) in 12 countries plus the H3 Africa project using live, structured interviews with senior project team members under the auspices of Canada's All for One Precision Health Initiative. We note the high level of interest in HDEs around the world, as well as in Canada, despite the financial, jurisdictional, and other barriers that continue to hold back widespread data sharing. We present results detailing operational profiles for each of the 13 participants, including whether their healthcare systems are centralized (national) or decentralized (regional), project start date, funding, information technology (IT) infrastructure, and the extent to which participants have implemented a data-sharing mandate. We find no evidence to confirm common assumptions about features conferring an advantage on HDE development, such as early launch date or top-down government mandate. We also find no evidence of a reference model to explain what makes any HDE effective, valuable, or successful and conclude, on the basis of our interviews, that the diversity that makes each of these projects unique may undermine collective actions like data sharing. While participants provided useful cautions about pitfalls they encountered, more research on these issues is required, and we anticipate that advanced assessment tools like the maturity level model (MLM) developed by the European Union (EU) may help countries understand what stage of the HDE development process they have reached and what strategies will be most effective for them in later stages.

Keywords: data sharing; genomics; health data ecosystem; precision medicine; public healthcare.