technical paper
Prevalence and Characteristics of Data Sharing Policies Across the Health Research Life Cycle: Funders, Ethics Committees, Trial Registries, Journals, and Data Repositories | VIDEO
keywords:
open and public access
data sharing and access
open science
Objective Most principal investigators support the concept
of data sharing in principle, but few commit to sharing data in
practice.1
One way shown to reduce this gap is if major
stakeholders across the research life cycle implement policies
to recommend or require data sharing. The objective of this
study was to determine the prevalence and characteristics of
data sharing policies.
Design This was a cross-sectional study of data sharing
policies of health research funders, research ethics
committees, clinical trial registries, peer-reviewed scientific
journals, and research data repositories. It included the 55
largest private and 55 largest public and philanthropic health
research funders by annual health research expenditure, all
national ethics committees, all clinical trial registries, the 5
highest-impact peer-reviewed scientific journals by journal
impact factor for each of the 59 fields of clinical medicine, and
all research data repositories in clinical medicine.
Investigators reviewed all official websites, online reports,
and gray literature information sources of stakeholders for
the presence of a data sharing policy. If present, investigators
assessed its magnitude of support for data sharing. If it
recommended or required data sharing, investigators
assessed its characteristics. All data were abstracted in
duplicate by 2 independent investigators who compared the
relevant information against structured criteria on a
prepiloted data extraction form and resolved disagreements
by discussion and a third investigator.
Results Overall, 110 health research funders, 124 national
ethics committees, 18 clinical trial registries, 273 peer-
reviewed scientific journals, and 410 research data
repositories were included. More than half of health research
funders either recommended (15 15%) or required (45
41%) data sharing. These policies typically applied to all
data from only interventional studies, with justified
exceptions, and specified data to be shared before a
predetermined period with independent committee–
approved investigators for research proposal–approved
purposes via third-party websites. Only 4 national ethics
committees (3%) recommended data sharing. These policies
typically applied to all studies, with justified exceptions, and
specified data to be shared via third-party websites. Only 1
clinical trial registry (6%) required data sharing. This policy
applied to only interventional studies, with justified
exceptions, and specified data to be shared via third-party
websites. Almost two-thirds of peer-reviewed scientific
journals either recommended (120 44%) or required (52
19%) data sharing. These policies typically applied to only
some data from all studies, with unjustified exceptions, and
specified data to be shared with anyone for any purpose via
third-party websites. Few research data repositories
recommended (26 6%) or required (24 6%) data sharing.
These policies typically applied to all data from all studies,
with unjustified exceptions, and specified data to be shared
with anyone for any purpose and via third-party websites.
Conclusions Data sharing imperatives were not met by
most stakeholders.
Reference
1. Tan AC, Askie LM, Hunter KE, Barba A, Simes RJ, Seidler
AL. Data sharing—trialists’ plans at registration, attitudes,
barriers and facilitators: a cohort study and cross-sectional
survey. Res Synth Methods. 2021;12(5):641-657. doi:10.1002/
jrsm.1500