The Power of Open Health Data: Impact, Representation, and Knowledge Diffusion

Open health data repositories receive billions in public funding, yet no systematic framework exists to evaluate their downstream scholarly impact, the composition of the research communities they cultivate, or the breadth of disciplines they reach. We introduce a two-degree citation methodology to quantify knowledge diffusion from open data, normalized by funding, and apply it to four major health data repositories.

Using the OpenAlex bibliometric database (January-February 2026), we identified all first-degree citing publications (n = 30,049) and their second-degree citing publications (n = 485,396), defined as papers citing those first-degree publications, for MIMIC (versions I-IV; retrospective EHR data; $14.4M), UK Biobank (prospective cohort with genomics; $525.5M), OpenSAFELY (federated EHR platform; $53.7M), and All of Us (prospective national cohort with biobanking and community engagement; $2,160M). We extracted author demographics (gender via Genderize.io, institutional country income via World Bank 2024 classifications) and research topics. Chi-square tests with odds ratios assessed demographic differences across repositories.

Funding-normalized first-degree papers per $1M ranged from 689 (MIMIC) to 1 (All of Us), though these figures reflect total program investment, which included community engagement and biobanking for prospective cohorts in addition to data-curation costs. The citation amplification ratio was consistent across these four repositories (9.3-11.5×). Author demographics differed significantly (p < 0.001): LMIC authorship ranged from 41.8% (MIMIC) to 4.3% (All of Us), while female authorship showed the opposite pattern, lowest for MIMIC (31.8%) and highest for All of Us (43.2%). Female authors were consistently underrepresented in senior (last-author) compared with first-author positions across all repositories. Differences in scope, design, and what funding covers limit direct comparisons.

Open health data generates a consistent ~10× indirect citation amplification beyond its direct users, a ratio that held across repositories spanning over two orders of magnitude in funding. The large differences in funding-normalized output partly reflect structural differences between retrospective databases and prospective cohorts. Low-cost access combined with intentional community building attracted globally diverse research communities with LMIC investigators in intellectual leadership positions, while a persistent gender gap in senior authorship across all repositories reflects disciplinary and structural inequities that data access policies alone cannot address. Future evaluations of open data investments should examine who is producing research, from where, in what positions, and whether their participation translates into locally relevant knowledge production.