Objective: How health researchers find secondary data to analyse is unclear. We sought to describe the approaches that UK organisations take to help researchers find data and to assess the findability of health data that are available for research.
Methods: We surveyed established organisations about how they make data findable. We derived measures of findability based on the first element of the FAIR principles (Findable, Accessible, Interoperable, Reproducible). We applied these to 13 UK health datasets and measured their findability via two major internet search engines in 2018 and repeated in 2021.
Results: Among 12 survey respondents, 11 indicated that they made metadata publicly available. Respondents said internet presence was important for findability, but that this needed improvement. In 2018, 8 out of 13 datasets were listed in the top 100 search results of 10 searches repeated on both search engines, while the remaining 5 were found one click away from those search results. In 2021, this had reduced to seven datasets directly listed and one dataset one click away. In 2021, Google Dataset Search had become available, which listed 3 of the 13 datasets within the top 100 search results.
Discussion: Measuring findability via online search engines is one method for evaluating efforts to improve findability. Findability could perhaps be improved with catalogues that have greater inclusion of datasets, field-level metadata and persistent identifiers.
Conclusion: UK organisations recognised the importance of the internet for finding data for research. However, health datasets available for research were no more findable in 2021 than in 2018.
Keywords: information management; medical informatics; record systems.
© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.