Enhancing Access to Health Data: Exploring the Global Data Trustee Landscape

OBJECTIVES: Secondary use of health data offers enormous research potential but is limited by legal and technical constraints. The data trustee concept, especially state-organized, is being discussed as a promising solution for overcoming access barriers. As the concept is rather young in research, detailed studies on their practical applicability and their design are still rare, despite existing data trustees. The study aims to bridge this gap by providing a better overview on the global data trustee landscape.

METHODS: To identify relevant organizations, a systematic literature review on data trustees was conducted in January and February 2024, using the Scopus and SpringerLink databases. The review followed the PRISMA guidelines in a 4-eyes review process and focused on English and German publications since 2013. Supplementary desk research was conducted to further analyze organization’s data trustee characteristics (e.g. organizational form, permission for secondary data usage).

RESULTS: From 52 publications, mentioning organizations in data trustee context, we extracted 89 organizations. By supplementary desk research, we identified 79 as data trustees, 51 were state-organized (including funding, e. g. by the EU). The majority of those (67) enabled secondary data use. The geographical distribution (doubling possible) showed 26 data trustees in the EU (12 in Germany), 16 in the UK, 15 in the US, 13 in Canada, and individual organizations in Korea, Japan, Singapore and Ethiopia. The vast majority of organizations (> 55) was handling health data (45 exclusively), while six were handling mobility data and others (finance, business, cities and socio-economic data).

CONCLUSIONS: In research, data trustees are predominantly concentrated in the global North with few cases outside Europe and the USA and some cross-country initiatives. The collected use cases show an overall strong focus on healthcare, implying a high potential and applicability of health data trustees, and provide a basis for further research.