Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff
- PMID: 26107811
- PMCID: PMC4481309
- DOI: 10.1371/journal.pone.0129506
Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff
Abstract
Background: Significant efforts are underway within the biomedical research community to encourage sharing and reuse of research data in order to enhance research reproducibility and enable scientific discovery. While some technological challenges do exist, many of the barriers to sharing and reuse are social in nature, arising from researchers' concerns about and attitudes toward sharing their data. In addition, clinical and basic science researchers face their own unique sets of challenges to sharing data within their communities. This study investigates these differences in experiences with and perceptions about sharing data, as well as barriers to sharing among clinical and basic science researchers.
Methods: Clinical and basic science researchers in the Intramural Research Program at the National Institutes of Health were surveyed about their attitudes toward and experiences with sharing and reusing research data. Of 190 respondents to the survey, the 135 respondents who identified themselves as clinical or basic science researchers were included in this analysis. Odds ratio and Fisher's exact tests were the primary methods to examine potential relationships between variables. Worst-case scenario sensitivity tests were conducted when necessary.
Results and discussion: While most respondents considered data sharing and reuse important to their work, they generally rated their expertise as low. Sharing data directly with other researchers was common, but most respondents did not have experience with uploading data to a repository. A number of significant differences exist between the attitudes and practices of clinical and basic science researchers, including their motivations for sharing, their reasons for not sharing, and the amount of work required to prepare their data.
Conclusions: Even within the scope of biomedical research, addressing the unique concerns of diverse research communities is important to encouraging researchers to share and reuse data. Efforts at promoting data sharing and reuse should be aimed at solving not only technological problems, but also addressing researchers' concerns about sharing their data. Given the varied practices of individual researchers and research communities, standardizing data practices like data citation and repository upload could make sharing and reuse easier.
Conflict of interest statement
Figures
Similar articles
-
The project data sphere initiative: accelerating cancer research by sharing data.Oncologist. 2015 May;20(5):464-e20. doi: 10.1634/theoncologist.2014-0431. Epub 2015 Apr 15. Oncologist. 2015. PMID: 25876994 Free PMC article.
-
Health researchers' experiences, perceptions and barriers related to sharing study results with participants.Health Res Policy Syst. 2019 Mar 4;17(1):25. doi: 10.1186/s12961-019-0422-5. Health Res Policy Syst. 2019. PMID: 30832733 Free PMC article.
-
To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region.PLoS One. 2015 Sep 17;10(9):e0138239. doi: 10.1371/journal.pone.0138239. eCollection 2015. PLoS One. 2015. PMID: 26378445 Free PMC article.
-
Responsible, practical genomic data sharing that accelerates research.Nat Rev Genet. 2020 Oct;21(10):615-629. doi: 10.1038/s41576-020-0257-5. Epub 2020 Jul 21. Nat Rev Genet. 2020. PMID: 32694666 Free PMC article. Review.
-
Developing a data sharing community for spinal cord injury research.Exp Neurol. 2017 Sep;295:135-143. doi: 10.1016/j.expneurol.2017.05.012. Epub 2017 May 30. Exp Neurol. 2017. PMID: 28576567 Free PMC article. Review.
Cited by
-
Knowledge and Attitudes Among Life Scientists Toward Reproducibility Within Journal Articles: A Research Survey.Front Res Metr Anal. 2021 Jun 29;6:678554. doi: 10.3389/frma.2021.678554. eCollection 2021. Front Res Metr Anal. 2021. PMID: 34268467 Free PMC article.
-
Multicenter data banking in management of dizzy patients: first results from the DizzyNet registry project.J Neurol. 2018 Oct;265(Suppl 1):3-8. doi: 10.1007/s00415-018-8864-1. Epub 2018 Apr 16. J Neurol. 2018. PMID: 29663119
-
NATIONAL ADDICTION AND HIV DATA ARCHIVE PROGRAM: DEVELOPING AN APPROACH FOR REUSE OF SENSITIVE AND CONFIDENTIAL DATA.J Priv Confid. 2023 Dec 6;13(2):10.29012/jpc.853. doi: 10.29012/jpc.853. J Priv Confid. 2023. PMID: 38469321 Free PMC article.
-
Investigating the Secondary Use of Clinical Research Data: Protocol for a Mixed Methods Study.JMIR Res Protoc. 2023 Mar 6;12:e44875. doi: 10.2196/44875. JMIR Res Protoc. 2023. PMID: 36877564 Free PMC article.
-
COLLAGENE enables privacy-aware federated and collaborative genomic data analysis.Genome Biol. 2023 Sep 11;24(1):204. doi: 10.1186/s13059-023-03039-z. Genome Biol. 2023. PMID: 37697426 Free PMC article.
References
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources
Other Literature Sources