This edition of the HILJ club has been prepared by Alison M. Forde, E-resources Librarian @alisonforde
Paper for discussion:
Milewska, A. et al. (2022) A survey of medical researchers indicates poor awareness of research data management processes and a role for data librarians. Health Information & Libraries Journal, 39(2), pp. 1471-1834. Available: https://doi.org/10.1111/hir.12403 [Free to read for two months courtesy Wiley]
Milewska et al surveyed Polish medical researchers as to their knowledge of research data management and attitudes to data sharing, in accordance with the European parliament directive on data sharing of publicly funded research data. This directive is echoed in the UK policy paper (Department of Health and Social Care, 2022), Data saves lives: reshaping health and social care with data. and the establishment of secure data environments for sharing NHS research data (applicable within England). A similar policy has been in place in Scotland for some years, with NHS research data being shared via regional data safe havens and new infrastructure and linkage being developed by Research Data Scotland, in partnership with the Scottish Government and other publicly funded research bodies. The authors point out that while the COVID-19 pandemic accelerated data sharing and many commercial publishers committed to sharing data related to this globally significant outbreak, government regulation on the sharing of publicly funded medical research data in Poland is still under development and the independent report (Goldacre, 2022) Better, broader, safer: using health data for research and analysis, outlines the challenges facing the NHS in fully exploiting the wealth of data generated within the UK health services.
The research paper in question
This research aimed to assess medical researchers’ knowledge and attitudes, as to the sharing of research data, with the aim of feeding into a training program offered by one national data platform in Poland. Research employees from 8 institutions collaborating on the platform were surveyed and responses obtained from all the participating institutions (603 respondents in total), although the authors do not tell us what the response rate was. While 38.7% of researchers stated that they use open research data, and could see benefits in collaboration, comparison and verification of results, the researchers who saw economic (societal when this is publicly funded) benefit to data sharing in safe havens, and were willing to do so, were in the minority. The vast majority only shared data within their research team. 95% did not have a data management plan and feared misuse/disadvantage from data sharing, in addition to lacking the technical expertise in preparing data for sharing and interoperability. The authors suggest that the training and employment of specialised data librarians is essential to support medical researchers in maximising the exploitation of data for the common good of the medical and scientific community.
Points to consider
- Literature cited by the authors indicates that resistance to sharing data is not unique to their respondents.
- To what extent does the very dispersed nature of the NHS in the UK prevent data sharing?
- How can sharing of medical and research data generated within the UK and partners be accelerated and will researcher attitudes be a barrier to progress?
- Is there a role for UK health librarians in data management support within research active NHS trusts and health boards?