Findability of UK health datasets available for research: a mixed methods study

Griffiths, Emily; Joseph, Rebecca M.; Tilston, George; Thew, Sarah; Kapacee, Zoher; Dixon, William; Peek, Niels

Abstract

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.

Citation

Griffiths, E., Joseph, R. M., Tilston, G., Thew, S., Kapacee, Z., Dixon, W., & Peek, N. (2022). Findability of UK health datasets available for research: a mixed methods study. BMJ Health & Care Informatics, 29(1), Article e100325. https://doi.org/10.1136/bmjhci-2021-100325

• Journal Article Type: Article
• Acceptance Date: Oct 25, 2021
• Online Publication Date: Feb 22, 2022
• Publication Date: Feb 22, 2022
• Deposit Date: Mar 11, 2022
• Publicly Available Date: Mar 14, 2022
• Journal: BMJ Health & Care Informatics
• Print ISSN: 2632-1009
• Electronic ISSN: 2632-1009
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 29
• Issue: 1
• Article Number: e100325
• DOI: https://doi.org/10.1136/bmjhci-2021-100325
• Keywords: Health Information Management; Health Informatics; Computer Science Applications
• Public URL: https://nottingham-repository.worktribe.com/output/7511608
• Publisher URL: https://informatics.bmj.com/content/29/1/e100325