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Data Sharing Policies across Health Research Globally: Cross-Sectional Meta-Research Study

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Title: Data Sharing Policies across Health Research Globally: Cross-Sectional Meta-Research Study
Language: English
Authors: Aidan C. Tan (ORCID 0000-0003-0354-4006), Angela C. Webster (ORCID 0000-0001-7509-0512), Sol Libesman (ORCID 0000-0001-7513-2663), Zijing Yang (ORCID 0000-0001-7041-459X), Rani R. Chand (ORCID 0000-0002-0175-3675), Weber Liu (ORCID 0000-0002-2156-3473), Talia Palacios (ORCID 0000-0002-1040-0724), Kylie E. Hunter (ORCID 0000-0002-2796-9220), Anna Lene Seidler (ORCID 0000-0002-0027-1623)
Source: Research Synthesis Methods. 2024 15(6):1060-1071.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 12
Publication Date: 2024
Document Type: Journal Articles
Reports - Research
Descriptors: Information Dissemination, Data, Health, Medical Research, Policy, COVID-19, Pandemics, Guidance, Program Implementation, Ethics, Research Committees
DOI: 10.1002/jrsm.1757
ISSN: 1759-2879
1759-2887
Abstract: Background: Data sharing improves the value, synthesis, and integrity of research, but rates are low. Data sharing might be improved if data sharing policies were prominent and actionable at every stage of research. We aimed to systematically describe the epidemiology of data sharing policies across the health research lifecycle. Methods: This was a cross-sectional analysis of the data sharing policies of the largest health research funders, all national ethics committees, all clinical trial registries, the highest-impact medical journals, and all medical research data repositories. Stakeholders' official websites, online reports, and other records were reviewed up to May 2022. The strength and characteristics of their data sharing policies were assessed, including their policies on data sharing intention statements (a.k.a. data accessibility statements) and on data sharing specifically for coronavirus disease studies. Data were manually extracted in duplicate, and policies were descriptively analysed by their stakeholder and characteristics. Results: Nine hundred and thirty-five eligible stakeholders were identified: 110 funders, 124 ethics committees, 18 trial registries, 273 journals, and 410 data repositories. Data sharing was required by 41% (45/110) of funders, no ethics committees or trial registries, 19% (52/273) of journals and 6% (24/410) of data repositories. Among funder types, a higher proportion of private (63%, 35/55) and philanthropic (67%, 4/6) funders required data sharing than public funders (12%, 6/49). Conclusion: Data sharing requirements, and even recommendations, were insufficient across health research. Where data sharing was required or recommended, there was limited guidance on implementation. We describe multiple pathways to improve the implementation of data sharing. Public funders and ethics committees are two stakeholders with particularly important untapped opportunities.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1447273
Database: ERIC
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  Value: <anid>AN0180736616;[bdct]01nov.24;2024Nov11.04:50;v2.2.500</anid> <title id="AN0180736616-1">Data sharing policies across health research globally: Cross‐sectional meta‐research study </title> <sbt id="AN0180736616-2">Highlights</sbt> <p>Background: Data sharing improves the value, synthesis, and integrity of research, but rates are low. Data sharing might be improved if data sharing policies were prominent and actionable at every stage of research. We aimed to systematically describe the epidemiology of data sharing policies across the health research lifecycle. Methods: This was a cross‐sectional analysis of the data sharing policies of the largest health research funders, all national ethics committees, all clinical trial registries, the highest‐impact medical journals, and all medical research data repositories. Stakeholders' official websites, online reports, and other records were reviewed up to May 2022. The strength and characteristics of their data sharing policies were assessed, including their policies on data sharing intention statements (a.k.a. data accessibility statements) and on data sharing specifically for coronavirus disease studies. Data were manually extracted in duplicate, and policies were descriptively analysed by their stakeholder and characteristics. Results: Nine hundred and thirty‐five eligible stakeholders were identified: 110 funders, 124 ethics committees, 18 trial registries, 273 journals, and 410 data repositories. Data sharing was required by 41% (45/110) of funders, no ethics committees or trial registries, 19% (52/273) of journals and 6% (24/410) of data repositories. Among funder types, a higher proportion of private (63%, 35/55) and philanthropic (67%, 4/6) funders required data sharing than public funders (12%, 6/49). Conclusion: Data sharing requirements, and even recommendations, were insufficient across health research. Where data sharing was required or recommended, there was limited guidance on implementation. We describe multiple pathways to improve the implementation of data sharing. Public funders and ethics committees are two stakeholders with particularly important untapped opportunities.</p> <p></p> <hd id="AN0180736616-3">What is already known</hd> <p></p> <ulist> <item> Support for data sharing by research participants, healthcare consumers, health researchers, and health professionals is high; however, health researchers' willingness to share data from their studies remains low.</item> <p></p> <item> Data sharing might be improved if data sharing policies were prominent and actionable at every stage of the health research lifecycle.</item> </ulist> <hd id="AN0180736616-4">What is new</hd> <p></p> <ulist> <item> Data sharing requirements, and even recommendations, were insufficient across health research, and where data sharing was required or recommended, there was limited guidance on implementation.</item> </ulist> <hd id="AN0180736616-5">Potential impact for Research Synthesis Methods readers</hd> <p></p> <ulist> <item> Public funders and ethics committees are two stakeholders with particularly important untapped opportunities to improve the implementation of data sharing.</item> </ulist> <hd id="AN0180736616-6">INTRODUCTION</hd> <p></p> <hd id="AN0180736616-7">Background</hd> <p>Research studies represent a huge investment of public funding, research time, and participant trust. Yet, the data from these research studies are frequently not available or only available as summary data, which limits their capacity to inform future research, clinical guidelines, policy, and practice. Calls for data sharing, the practice of making de‐identified participant‐level data from studies available for use by other researchers, have grown louder in recent years. The coronavirus disease (COVID‐19) pandemic, technological developments (e.g., research data repositories and other online infrastructure and tools) and statistical advances (e.g., more complex analyses enabled by improved computing power) have increased the scientific imperative to share data.[[<reflink idref="bib1" id="ref1">1</reflink>]] Data sharing enhances research value by enabling researchers to conduct secondary analyses to evaluate new important questions and generate additional knowledge. It improves evidence synthesis by facilitating the combination of data across similar studies in individual participant data (IPD) meta‐analyses. It also enhances research integrity and transparency by enabling reproduction and verification of the findings using the same analysis on the original data, and allowing detailed integrity checks.[<reflink idref="bib3" id="ref2">3</reflink>] Meanwhile, the gradual shift in cultural perception from data ownership to data custodianship and stewardship, which is an approach to data management characterised by responsibility for long‐term governance and social value, has increased the ethical imperative to share data.[<reflink idref="bib4" id="ref3">4</reflink>] Data sharing from clinical trials is considered an ethical obligation by the International Committee of Medical Journal Editors,[<reflink idref="bib5" id="ref4">5</reflink>] to honour the risk participants take to advance science by increasing the likelihood their participation results in useful findings.</p> <p>Unsurprisingly, support for data sharing by research participants, healthcare consumers, health researchers, and health professionals is high.[[<reflink idref="bib6" id="ref5">6</reflink>], [<reflink idref="bib8" id="ref6">8</reflink>], [<reflink idref="bib10" id="ref7">10</reflink>], [<reflink idref="bib12" id="ref8">12</reflink>]] However, health researchers' willingness to share data from their studies remains low.[[<reflink idref="bib14" id="ref9">14</reflink>]] Recently, we found 77% of principal investigators supported data sharing, but only 22% committed to sharing data from their clinical trial.[<reflink idref="bib16" id="ref10">16</reflink>] Data sharing might be improved if data sharing policies were accessible (i.e., able to be easily obtained and used by people without experience with sharing data), prominent (i.e., visible and easy to find), and actionable (i.e., easy to follow/implement) at every stage of the health research lifecycle.</p> <hd id="AN0180736616-8">Objectives</hd> <p>We aimed to systematically describe the epidemiology of data sharing policies across the health research lifecycle and identify pathways to improve the implementation of data sharing.</p> <hd id="AN0180736616-9">METHODS</hd> <p></p> <hd id="AN0180736616-10">Study design</hd> <p>This was a cross‐sectional analysis of data sharing policies. The protocol was prospectively registered on the Open Science Framework (https://osf.io/vjr23). This study is reported according to the Strengthening the Reporting of Observational Studies in Epidemiology Statement.[<reflink idref="bib17" id="ref11">17</reflink>]</p> <hd id="AN0180736616-11">Setting</hd> <p>We focused on stakeholders with respect to data sharing policies for interventional studies (i.e., clinical trials in human health research). We considered the stages of human health research to be funding, ethics, registration, publication (including pre‐publication), and post‐publication, and the international stakeholders at each stage to be funders, national ethics committees, trial registries, journals, and data repositories.</p> <hd id="AN0180736616-12">Stakeholders</hd> <p>We included the largest public and philanthropic funders by annual health research expenditure and the largest private funders by annual health industry research and development expenditure. Public and philanthropic funders were identified from the latest review of the largest public and philanthropic funders in health research by Viergever and Hendriks.[<reflink idref="bib18" id="ref12">18</reflink>] Private funders were defined as health industry companies which invest in research and development and were identified from the European Union Industrial Research and Development Investment Scoreboard.[<reflink idref="bib19" id="ref13">19</reflink>] We included all national ethics committees. These were identified from a review of all national ethics committees globally by Hummel et al.[<reflink idref="bib20" id="ref14">20</reflink>] We focused on national ethics committees because the policies of local ethics committees are likely to reflect the positions of national ethics committees, most local academic and industry ethics committees are not publicly available, and most countries do not openly publish lists of all ethics committees. We included all clinical trial registries which were a World Health Organisation (WHO) primary registry or data provider, according to the ICMJE clinical trial registration policy.[<reflink idref="bib21" id="ref15">21</reflink>] These were identified from the WHO Registry Network.[<reflink idref="bib22" id="ref16">22</reflink>] Partner registries and databases specific to disease, device, or procedure were excluded. We included the 5 journals with the highest impact factor for each of the 59 fields of medicine identified from the 2020 Journal Citation Reports.[<reflink idref="bib23" id="ref17">23</reflink>] Books and duplicate records for journals listed in more than one field of medicine were excluded. We included all research data repositories in medicine. These were identified from re3data, a global registry of research data repositories.[<reflink idref="bib24" id="ref18">24</reflink>]</p> <hd id="AN0180736616-13">Characterisation of data sharing policies and stakeholders</hd> <p>We assessed stakeholders for the strength and characteristics of their data sharing policy. Data sharing policies were defined as any written record which referred to the principles, processes, or practice of sharing data. Since the focus of this review was on whether major stakeholders recommend or require data sharing, and not how data would be shared the question of whether and how these policies were adhered to is out of scope for this current research project. We considered data sharing policies encompassing a range of ways of making study data available, including though a third party or publishing journal website university data warehouse, or study data provided upon request to the principal investigator or primary sponsor. The strength of a data sharing policy was defined as its magnitude of support for data sharing, conceptualised as a spectrum of data sharing required, recommended (but not required), mentioned (but neither required nor recommended) or absent (no data sharing policy). The characteristics of a data sharing policy were described by its guidance on what, when, who with, how, and why to share data, and are presented in Table S1. We also assessed stakeholders for the strength of their policies on data sharing intention statements and on data sharing specifically for COVID‐19 studies. These were defined as any written record which referred to the principles, processes or practice of investigators stating their data sharing intentions or making data specifically from COVID‐19 studies available for use by other researchers, respectively. These were similarly conceptualised as a spectrum of required, recommended, mentioned, or absent. We categorised all stakeholders by type, country, region, and country income group. We additionally characterised journals by 2020 impact factor and publisher, and data repositories by institution type and responsibility, database access regulations, and data access and upload regulations.</p> <hd id="AN0180736616-14">Data sources</hd> <p>We searched Google in May 2022 to identify stakeholders' official websites, online reports, and other records. These were identified by searching the stakeholders name and reviewing the first 50 results. If no publicly available information sources were identified, we emailed the stakeholder and requested information (e.g., for policies within a local intranet or behind a sign‐in function). Two independent investigators manually extracted all data in duplicate by comparing the relevant information against structured criteria on a pre‐piloted data extraction form. If extracted data from the two independent investigators differed, a third investigators also extracted the data and consensus was achieved by discussion among all investigators. Non‐English information sources were reviewed in duplicate by two reviewers, either with a native language speaker (Chinese, Hindi, and Spanish) or the aid of Google Translate (other languages).[<reflink idref="bib25" id="ref19">25</reflink>] We re‐reviewed information where possible with regular Google searches and tracking major websites and press announcements for data sharing changes.</p> <hd id="AN0180736616-15">Statistical methods</hd> <p>We descriptively analysed data sharing policies by their stakeholder and characteristics. Inferential analyses and statistical significance tests were not conducted because we were looking at entire populations of stakeholders (not population sub‐samples from which inferences need to be drawn). We described categorical variables by absolute and relative frequency and continuous variables by median and interquartile range.</p> <hd id="AN0180736616-16">Patient and public involvement</hd> <p>Patients or public were not involved in this study.</p> <hd id="AN0180736616-17">RESULTS</hd> <p>We identified 935 eligible stakeholders: 110 funders (55 public or philanthropic, and 55 private), 124 ethics committees, 18 trial registries, 273 journals (after excluding 2 books and 20 duplicate records), and 410 data repositories. Stakeholders' policies on data sharing and data sharing intention statements are displayed in Figures 1 and 2, and characteristics of stakeholders and policies which required data sharing are presented in Tables 1 and 2. Detailed results are accessible in our interactive, online dashboard (see Supplementary Material S2).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/BDCT/01nov24/jrsm1757-fig-0001.jpg?ephost1=dGJyMMvl7ESepq84yOvsOLCmsE6epq5Srqa4SK6WxWXS" alt="jrsm1757-fig-0001.jpg" title="1 Stakeholder policies on data sharing." /> </p> <p></p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/BDCT/01nov24/jrsm1757-fig-0002.jpg?ephost1=dGJyMMvl7ESepq84yOvsOLCmsE6epq5Srqa4SK6WxWXS" alt="jrsm1757-fig-0002.jpg" title="2 Stakeholder policies on data sharing intention statements." /> </p> <p></p> <p>1 TABLE Characteristics of stakeholders.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="left">Funders</th><th align="left">Ethics committees</th><th align="left">Trial registries</th><th align="left">Journals</th><th align="left">Data repositories</th></tr><tr><th align="left"><italic>N</italic> = 110 (%)</th><th align="left"><italic>N</italic> = 124 (%)</th><th align="left"><italic>N</italic> = 18 (%)</th><th align="left"><italic>N</italic> = 273 (%)</th><th align="left"><italic>N</italic> = 410 (%)</th></tr></thead><tbody valign="top"><tr><td align="left">Type of stakeholder, n</td></tr><tr><td align="left" /><td align="left">Public49 (45)</td><td align="left">Bioethics<xref ref-type="fn" rid="tfn1" />65 (52)</td><td align="left">Primary registry<xref ref-type="fn" rid="tfn2" />17 (94)</td><td align="left">N/A</td><td align="left">Data provider<xref ref-type="fn" rid="tfn3" />380 (93)</td></tr><tr><td align="left">Philanthropic6 (5)</td><td align="left">Research ethics<xref ref-type="fn" rid="tfn1" />26 (21)</td><td align="left">Data provider<xref ref-type="fn" rid="tfn2" />1 (6)</td><td align="left">Service provider<xref ref-type="fn" rid="tfn3" />30 (7)</td></tr><tr><td align="left">Private pharmaceutical and biotechnology44 (40)</td></tr><tr><td align="left">Research ethics review<xref ref-type="fn" rid="tfn1" />44 (36)</td></tr><tr><td align="left">Unknown5 (4)</td></tr><tr><td align="left">Private healthcare equipment and services11 (10)</td></tr><tr><td align="left">Region of stakeholder<xref ref-type="fn" rid="tfn4" />, n</td></tr><tr><td align="left">East Asia and Pacific</td><td align="left">23 (21)</td><td align="left">15 (12)</td><td align="left">5 (28)</td><td align="left">0 (0)</td><td align="left">25 (6)</td></tr><tr><td align="left">Europe and Central Asia</td><td align="left">42 (38)</td><td align="left">53 (43)</td><td align="left">4 (22)</td><td align="left">0 (0)</td><td align="left">125 (30)</td></tr><tr><td align="left">Latin America and Caribbean</td><td align="left">6 (5)</td><td align="left">19 (15)</td><td align="left">3 (17)</td><td align="left">0 (0)</td><td align="left">2 (1)</td></tr><tr><td align="left">Middle East and North Africa</td><td align="left">2 (2)</td><td align="left">9 (7)</td><td align="left">2 (11)</td><td align="left">0 (0)</td><td align="left">4 (1)</td></tr><tr><td align="left">North America</td><td align="left">31 (28)</td><td align="left">3 (2)</td><td align="left">1 (6)</td><td align="left">0 (0)</td><td align="left">222 (54)</td></tr><tr><td align="left">South Asia</td><td align="left">3 (3)</td><td align="left">6 (5)</td><td align="left">2 (11)</td><td align="left">0 (0)</td><td align="left">9 (2)</td></tr><tr><td align="left">Sub‐Saharan Africa</td><td align="left">3 (3)</td><td align="left">19 (15)</td><td align="left">1 (6)</td><td align="left">0 (0)</td><td align="left">3 (1)</td></tr><tr><td align="left">Global</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">273 (100)</td><td align="left">20 (5)</td></tr><tr><td align="left">Income group of country<xref ref-type="fn" rid="tfn4" />, n</td></tr><tr><td align="left">Low</td><td align="left">0 (0)</td><td align="left">11 (9)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">1 (1)</td></tr><tr><td align="left">Lower middle</td><td align="left">3 (3)</td><td align="left">23 (19)</td><td align="left">3 (17)</td><td align="left">0 (0)</td><td align="left">10 (2)</td></tr><tr><td align="left">Upper middle</td><td align="left">19 (17)</td><td align="left">31 (25)</td><td align="left">7 (39)</td><td align="left">0 (0)</td><td align="left">8 (2)</td></tr><tr><td align="left">High</td><td align="left">88 (80)</td><td align="left">59 (48)</td><td align="left">8 (44)</td><td align="left">0 (0)</td><td align="left">371 (90)</td></tr><tr><td align="left">Not applicable</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">273 (100)</td><td align="left">20 (5)</td></tr><tr><td align="left">Data sharing policy, n</td></tr><tr><td align="left">Absent</td><td align="left">36 (33)</td><td align="left">85 (69)</td><td align="left">9 (50)</td><td align="left">56 (21)</td><td align="left">282 (69)</td></tr><tr><td align="left">Mentioned</td><td align="left">13 (12)</td><td align="left">6 (5)</td><td align="left">8 (44)</td><td align="left">45 (16)</td><td align="left">78 (19)</td></tr><tr><td align="left">Recommended</td><td align="left">16 (15)</td><td align="left">4 (3)</td><td align="left">1 (6)</td><td align="left">120 (44)</td><td align="left">26 (6)</td></tr><tr><td align="left">Required</td><td align="left">45 (41)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">52 (19)</td><td align="left">24 (6)</td></tr><tr><td align="left">No information</td><td align="left">0 (0)</td><td align="left">29 (23)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td></tr><tr><td align="left">Data sharing statement policy, n</td></tr><tr><td align="left">Absent</td><td align="left">109 (99)</td><td align="left">91 (73)</td><td align="left">3 (17)</td><td align="left">82 (30)</td><td align="left">383 (93)</td></tr><tr><td align="left">Mentioned</td><td align="left">0 (0)</td><td align="left">3 (2)</td><td align="left">6 (33)</td><td align="left">6 (2)</td><td align="left">12 (3)</td></tr><tr><td align="left">Recommended</td><td align="left">0 (0)</td><td align="left">1 (1)</td><td align="left">0 (0)</td><td align="left">53 (19)</td><td align="left">5 (1)</td></tr><tr><td align="left">Required</td><td align="left">1 (1)</td><td align="left">0 (0)</td><td align="left">9 (50)</td><td align="left">132 (48)</td><td align="left">10 (2)</td></tr><tr><td align="left">No information</td><td align="left">0 (0)</td><td align="left">29 (23)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td></tr><tr><td align="left">COVID‐19 specific data sharing policy, n</td></tr><tr><td align="left">Absent</td><td align="left">108 (98)</td><td align="left">92 (74)</td><td align="left">18 (100)</td><td align="left">249 (91)</td><td align="left">398 (97)</td></tr><tr><td align="left">Mentioned</td><td align="left">0 (0)</td><td align="left">2 (2)</td><td align="left">0 (0)</td><td align="left">7 (3)</td><td align="left">9 (2)</td></tr><tr><td align="left">Recommended</td><td align="left">2 (2)</td><td align="left">1 (1)</td><td align="left">0 (0)</td><td align="left">17 (6)</td><td align="left">3 (1)</td></tr><tr><td align="left">Required</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td></tr><tr><td align="left">No information</td><td align="left">0 (0)</td><td align="left">29 (23)</td><td align="left">0 (0)</td><td align="left">0 (0)</td><td align="left">0 (0)</td></tr></tbody></table> </ephtml> </p> <p>1 a Percentages of type of stakeholder for ethics committees do not sum to 100 because some ethics committees were included in more than one category.</p> <ulist> <item>2 b Primary registries are clinical trial registries which meet World Health Organisation (WHO) Registry Network specific criteria for content, quality and validity, accessibility, unique identification, technical capacity and administration. Data providers are clinical trial registries which are responsible for a database that provides data to WHO for inclusion in the International Clinical Trials Registry Platform Search Portal. Registration in either a primary registry or ClinicalTrials.gov is a requirement of the ICMJE clinical trial registration policy.[<reflink idref="bib21" id="ref20">21</reflink>]</item> <item>3 c Data providers are data repositories which store or offer research data and its metadata. Service providers are data repositories which harvests and aggregate the metadata of research data from data providers.</item> <item>4 d As per the World Bank classification.</item> <item>2 TABLE Characteristics of policies which required data sharing.</item> </ulist> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="left">Funders</th><th align="left">Journals</th><th align="left">Data repositories</th></tr><tr><th align="left"><italic>n</italic> = 45 (%)</th><th align="left"><italic>n</italic> = 52 (%)</th><th align="left"><italic>n</italic> = 24 (%)</th></tr></thead><tbody valign="top"><tr><td align="left">What studies, n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">All studies</td><td align="char" char="(">14 (31)</td><td align="char" char="(">47 (90)</td><td align="char" char="(">19 (79)</td></tr><tr><td align="left">Only interventional studies</td><td align="char" char="(">31 (69)</td><td align="char" char="(">5 (10)</td><td align="char" char="(">5 (21)</td></tr><tr><td align="left">What data, n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">All IPD collected during the study</td><td align="char" char="(">37 (82)</td><td align="char" char="(">1 (2)</td><td align="char" char="(">8 (33)</td></tr><tr><td align="left">Only IPD underlying the published results</td><td align="char" char="(">5 (11)</td><td align="char" char="(">49 (94)</td><td align="char" char="(">5 (21)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">3 (7)</td><td align="char" char="(">2 (4)</td><td align="char" char="(">11 (46)</td></tr><tr><td align="left">What supporting documents, n<xref ref-type="fn" rid="tfn7" /></td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">Study protocol</td><td align="char" char="(">29 (64)</td><td align="char" char="(">27 (52)</td><td align="char" char="(">3 (13)</td></tr><tr><td align="left">Statistical analysis plan</td><td align="char" char="(">17 (38)</td><td align="char" char="(">1 (2)</td><td align="char" char="(">1 (4)</td></tr><tr><td align="left">Informed consent form</td><td align="char" char="(">1 (2)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Clinical study report</td><td align="char" char="(">26 (58)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Analytic code</td><td align="char" char="(">2 (4)</td><td align="char" char="(">38 (73)</td><td align="char" char="(">3 (13)</td></tr><tr><td align="left">Materials</td><td align="char" char="(">0 (0)</td><td align="char" char="(">35 (67)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">11 (24)</td><td align="char" char="(">10 (19)</td><td align="char" char="(">19 (79)</td></tr><tr><td align="left">What exceptions, n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">Justified</td><td align="char" char="(">36 (80)</td><td align="char" char="(">13 (25)</td><td align="char" char="(">9 (38)</td></tr><tr><td align="left">Unjustified</td><td align="char" char="(">1 (2)</td><td align="char" char="(">29 (56)</td><td align="char" char="(">15 (63)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">8 (18)</td><td align="char" char="(">10 (19)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">When start, n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">Before publication</td><td align="char" char="(">0 (0)</td><td align="char" char="(">1 (2)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Immediately following publication</td><td align="char" char="(">8 (18)</td><td align="char" char="(">11 (21)</td><td align="char" char="(">3 (13)</td></tr><tr><td align="left">Before a pre‐determined period following publication</td><td align="char" char="(">22 (49)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">15 (33)</td><td align="char" char="(">40 (77)</td><td align="char" char="(">21 (88)</td></tr><tr><td align="left">When stop, n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">No end date</td><td align="char" char="(">1 (2)</td><td align="char" char="(">4 (8)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">After a pre‐determined period following publication</td><td align="char" char="(">10 (22)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">34 (76)</td><td align="char" char="(">48 (92)</td><td align="char" char="(">24 (100)</td></tr><tr><td align="left">Who (people or entity), n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">Anyone who wishes to access the data</td><td align="char" char="(">2 (4)</td><td align="char" char="(">43 (83)</td><td align="char" char="(">15 (63)</td></tr><tr><td align="left">Research proposal</td><td align="char" char="(">5 (11)</td><td align="char" char="(">5 (10)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Independent committee</td><td align="char" char="(">30 (67)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Investigator discretion</td><td align="char" char="(">0 (0)</td><td align="char" char="(">3 (6)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Sponsor discretion</td><td align="char" char="(">1 (2)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">7 (16)</td><td align="char" char="(">1 (2)</td><td align="char" char="(">9 (38)</td></tr><tr><td align="left">Why (purpose), n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">Any purpose</td><td align="char" char="(">2 (4)</td><td align="char" char="(">33 (63)</td><td align="char" char="(">14 (58)</td></tr><tr><td align="left">Research proposal</td><td align="char" char="(">36 (80)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Investigator discretion</td><td align="char" char="(">0 (0)</td><td align="char" char="(">2 (4)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Sponsor discretion</td><td align="char" char="(">1 (2)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">6 (13)</td><td align="char" char="(">17 (33)</td><td align="char" char="(">10 (42)</td></tr><tr><td align="left">How (distribution), n</td><td align="left" /><td align="left" /><td align="left" /></tr><tr><td align="left">Third‐party website</td><td align="char" char="(">25 (56)</td><td align="char" char="(">50 (96)</td><td align="char" char="(">23 (96)</td></tr><tr><td align="left">Publishing journal website</td><td align="char" char="(">0 (0)</td><td align="char" char="(">2 (4)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Primary sponsor contact</td><td align="char" char="(">2 (4)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Own/partner platform</td><td align="char" char="(">4 (9)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">0 (0)</td></tr><tr><td align="left">Not specified</td><td align="char" char="(">14 (31)</td><td align="char" char="(">0 (0)</td><td align="char" char="(">1 (4)</td></tr></tbody></table> </ephtml> </p> <ulist> <item>5 <emph>Note</emph>: No ethics committees or trial registries required data sharing.</item> <item>6 Abbreviations: IPD, individual participant data.</item> <item>7 a Percentages of supporting documents for funders, journals and data repositories do not sum to 100 because stakeholders could be included in more than one category.</item> </ulist> <p>Funders required data sharing at the highest rate (41%, 45/110) across stakeholder groups. Among funder types, a higher proportion of private (63%, 35/55) and philanthropic (67%, 4/6) funders required data sharing than public funders (12%, 6/49). A higher proportion of funders from high‐income countries (50%, 44/88) required data sharing than those from upper (5%, 1/19) and lower (0/3) middle‐income countries. When required, data sharing mostly applied to all IPD collected (82%, 37/45) during only interventional studies (69%, 31/45), required inclusion of supporting documents (76%, 34/45), and justified any allowable exceptions to this requirement (80%, 36/45). Data sharing requirements most frequently started after a pre‐determined period following publication (49%, 22/45). They required data to be shared with those whose proposed use of IPD had been reviewed, assessed, and approved by an independent data access committee (67%, 30/45), to achieve the aims in an approved proposal (80%, 36/45), with unrestricted access through a third‐party website (56%, 25/45). However, the time after which data sharing was no longer required was mostly not specified (24%, 11/45). Another 15% (16/110) of funders only recommended data sharing. Only one funder (0.8%, 1/110) required data sharing intention statements.</p> <p>We identified no ethics committees that required data sharing and only 3% (4/124) recommended data sharing. No ethics committees required, and only one recommended (0.8%, 1/124), data sharing intention statements. For 26% (32/124) of ethics committees, we could not identify any information sources, and for 11 of these, we could not identify a contact email. We emailed the 21 ethics committees with a contact email and received 3 responses confirming the absence of a data sharing policy, bounced emails from 6, and no response after 12 months from the remainder.</p> <p>No trial registries required data sharing and only one (6%, 1/18) recommended data sharing. Most trial registries required (50%, 9/18) or recommended (33%, 6/18) data sharing intention statements.</p> <p>Journals required data sharing at the second highest rate (19%, 52/273) across stakeholder groups. The median 2020 impact factor was higher in journals that required data sharing (17.5) than those that did not (8.3). Another 44% (120/273) of journals only recommended data sharing. When required, data sharing mostly applied to only IPD underlying the published results (94%, 49/52) of all study types (90%, 47/52), required inclusion of supporting documents (81%, 42/45), and did not justified any allowable exceptions to this requirement (56%, 29/52). Data sharing requirements most frequently required data to be shared with anyone who wished to access the data (83%, 43/52), for any purpose (63%, 33/52), with unrestricted access through a third‐party website (100%, 52/52). However, the time when data were required to start being shared (23%, 12/52) and were no longer required (8%, 4/52) was mostly not specified. In most cases, journals which required or recommended data sharing also required or recommended data sharing intention statements, so similar proportions of journals required (19%, 53/273) or recommended (48%, 132/273) data sharing intention statements. Of 44 publishers, the five largest each contributed ≥10 journals and represented 71% (193/273) of included journals. Of these five publishers, a higher proportion of journals published by Springer Nature (61%, 30/49) required data sharing than journals published by John Wiley & Sons (17%, 5/30), University of Oxford (12%, 2/17), Elsevier (6%, 5/84), or Wolters Kluwer (0/13).</p> <p>Only 6% (24/410) of data repositories required data sharing, all from non‐profit organisations. A higher proportion of data repositories in upper middle‐income countries (25%, 2/8) required data sharing than those in high (5%, 20/351) and lower middle‐ and low‐ (0/11) income countries. When required, data sharing mostly applied to all studies (79%, 19/24) and did not justified any allowable exceptions to this requirement (63%, 15/24). Data sharing requirements most frequently required data to be shared with anyone who wished to access the data (63%, 15/24), for any purpose (58%, 14/24), with unrestricted access through a third‐party website (96%, 23/24). However, the data (54%, 13/24) and supporting documents (21%, 5/24) required to be shared, and time when data were required to start being shared (12%, 3/24) and were no longer required (0/24) were mostly not specified. Few data repositories required (2%, 10/410) or recommended (4%, 15/410) data sharing intention statements.</p> <p>No stakeholders required data sharing specifically for COVID‐19 studies. Only 2% (2/110) of funders, 0.8% (1/124) of ethics committee, no trial registries, 6% of journals (17/273), and 0.7% (3/410) of data repositories recommended data sharing specifically for COVID‐19 studies.</p> <hd id="AN0180736616-20">DISCUSSION</hd> <p></p> <hd id="AN0180736616-21">Statement of principal findings</hd> <p>Data sharing requirements, and even recommendations, were insufficient across health research. Where data sharing was required or recommended, there was limited guidance on implementation (i.e., <emph>how</emph> to share data/ comply with the data sharing policy). Despite high‐profile calls for data sharing since the COVID‐19 pandemic (e.g., from Wellcome, the United States' National Institutes of Health and the WHO), no stakeholders required data sharing specifically for COVID‐19 studies. We see multiple pathways, displayed in Figure 3, for funders, ethics committees, trial registries, and journals to improve the implementation of data sharing.</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/BDCT/01nov24/jrsm1757-fig-0003.jpg?ephost1=dGJyMMvl7ESepq84yOvsOLCmsE6epq5Srqa4SK6WxWXS" alt="jrsm1757-fig-0003.jpg" title="3 Pathways to improve the implementation of data sharing." /> </p> <p></p> <hd id="AN0180736616-23">Strengths and weaknesses of the study</hd> <p>This study has many strengths. We assessed an entire population of 935 stakeholders across health research globally, giving the most systematic picture of the data sharing policy landscape to date. We followed gold standard data extraction standards, all data were extracted in duplicate by two independent investigators, stakeholders were contacted for missing information, and non‐English information sources were included. There were some limitations. We emailed stakeholders and requested information when we could not identify information sources, but not all responded and some information sources may only be privately available. Public and philanthropic funders were identified from a review published in 2016, and the landscape may have changed in the intervening 6 years. We first searched in May 2022, and with almost 1000 stakeholders to review were unable to repeat the search and data extraction completely. Yet, we re‐reviewed information where possible with regular Google searches and tracking major websites and press announcements for data sharing changes. The only change in data sharing policy to which we are aware is the NIH Policy for Data Management and Sharing (25 January 2023). The classification of data sharing policies into our pre‐specified categories was sometimes difficult. Some stakeholders who mentioned data sharing explained why it was important but refrained from recommending it. Other stakeholders who recommended or required data sharing used terminology which ranged in magnitude of support, including 'suggest', 'encourage', 'endorse', and 'expect'. This ambiguity likely minimises the impact of data sharing policies, so we recommend stakeholders use clearer language in future.</p> <hd id="AN0180736616-24">Meaning of the study</hd> <p>Funders' requirements to share data are associated with a high degree of actual adherence to data sharing requirements.[<reflink idref="bib2" id="ref21">2</reflink>] Funders, particularly those distributing taxpayer money, have a fiduciary interest to prevent duplication of data collection activities and support timely availability for data on‐us. Yet, in our study, public funders were five times less likely to require data sharing than private funders. Public funders have a major opportunity to leverage their influence by requiring researchers to formulate their data sharing intentions at study outset, requiring data sharing within a reasonable time after project completion for all funded research and withholding further or future funding for non‐adherence. Funders could require budgeting and allocation of sufficient resources to manage, curate, store, and share data for all grant applications, fund research projects aimed at improving data sharing, and recognise data sharing in the assessment of researchers.</p> <p>Ethical considerations have a large role in the decision to share data, and we recently found that concerns about participant privacy, informed consent, and ethical approval constitute the most common reasons for investigators not to share data.[<reflink idref="bib16" id="ref22">16</reflink>] Ethics committees often assess whether proposals for secondary use of data meet ethical and regulatory standards.[<reflink idref="bib26" id="ref23">26</reflink>] Yet, in our study no ethics committee required data sharing. Only 3% of ethics committees even recommended data sharing and only one recommended data sharing intention statements. Ethics committees are an untapped resource to strengthen the social licence and public acceptability of data sharing by recommending data sharing, or even just requiring researchers to formulate their data sharing intentions at study outset. Ethics committees can assess data sharing plans to ensure they consider safety, consent, and privacy issues, and, for reasonable requests, grant waivers of consent for secondary use of data that have already been collected.</p> <p>Trial investigators are required to include a data sharing plan in their prospective trial registration records by the ICMJE,<sups>5</sups> and data sharing plans are required in the WHO Trial Registration Data Set.[[<reflink idref="bib5" id="ref24">5</reflink>], [<reflink idref="bib22" id="ref25">22</reflink>]] Yet, in our study 17% (3/18) of trial registries did not require data sharing statements. The requirement to formulate data sharing intentions at trial registration has been an important step towards establishing data sharing policies early on and transparently, and addressing issues of data management, informed consent, and ethics approval. Although no trial registry currently does, there is scope for trial registries to expediate the validation of research and evidence synthesis by recommending data sharing, stipulating what data sharing means and sharing guidance on how this can be actioned. Trial registries can require information on data availability once a clinical trial has been completed via an update of the registration record and provide links to data sharing repositories in the registration record. In Australia, the Health Studies Australian National Data Asset (HeSANDA, https://ardc.edu.au/program/health-studies-australian-national-data-asset/) programme is addressing this issue by building national infrastructure for data sharing in health research.</p> <p>Journals who are members of the Committee on Publication Ethics, Directory of Open Access Journals, Open Access Scholarly Publishers Association, and the World Association of Medical Editors are required to have a policy on data sharing and reproducibility,[<reflink idref="bib27" id="ref26">27</reflink>] and publisher conformance with this is required for a journal to be indexed in MEDLINE or PubMed Central by the National Library of Medicine.[<reflink idref="bib28" id="ref27">28</reflink>] Yet, in our study, 21% (56/273) of journals did not meet this requirement despite being indexed in MEDLINE and PubMed Central, suggesting this policy is not widely enforced. Our findings that stronger data sharing policies were associated with higher impact factor concur with previous studies.[[<reflink idref="bib29" id="ref28">29</reflink>], [<reflink idref="bib31" id="ref29">31</reflink>]] There is scope for more journals to enhance the transparency of findings and confidence in results by requiring data submission with manuscript submission, requiring data sharing for articles they publish, requiring data sharing intention statements at the time of manuscript submission. Journals can engage data editors, request data peer‐review, permit large co‐authorship teams for IPD projects (which frequently require large collaborative groups) and recognise shared IPD as a citable research output with persistent international identifiers, citation metrics, and authorship credit.</p> <p>Where data sharing was required or recommended, there was limited guidance on implementation (i.e., <emph>how</emph> to share data/comply with the data sharing policy). In particular, whilst some stakeholders required data to be shared with unrestricted access through a third‐party website, there were 2 out of 121 (both funders) that required data to be shared on request to the sponsor. Other stakeholders did not stipulate how data should be stored and shared, which may lead to data sharing being understood as data sharing upon request to the principal investigator. In the past such statements have led to data actually being shared for <40% of requests.[<reflink idref="bib32" id="ref30">32</reflink>] Thus, in future, stakeholders should develop better guidance on how data sharing policies should be implemented, and consider more rigorous control and more stringent enforcement mechanisms of data release by stakeholders to ensure data accessibility.</p> <p>Stakeholders across the health research lifecycle offer insufficient mandate and direction for data sharing. Public funders and ethics committees are two stakeholders with particularly important untapped opportunities to improve the implementation of data sharing. Future qualitative research is needed to further outline these pathways, and engage stakeholders to identify and resolve potential barriers to implementing them.</p> <hd id="AN0180736616-25">AUTHOR CONTRIBUTIONS</hd> <p> <bold>Aidan C. Tan:</bold> Conceptualization; data curation; formal analysis; investigation; methodology; project administration; validation; visualization; writing—original draft; writing—review and editing. <bold>Angela C. Webster:</bold> Conceptualization; supervision; writing—review and editing. <bold>Sol Libesman:</bold> Data curation; formal analysis; investigation; validation; visualization; writing—review and editing. <bold>Zijing Yang:</bold> Data curation; writing—review and editing; investigation. <bold>Rani R. Chand:</bold> Data curation; investigation; writing—review and editing. <bold>Weber Liu:</bold> Data curation; writing—review and editing; investigation. <bold>Talia Palacios:</bold> Data curation; writing—review and editing; investigation. <bold>Kylie E. Hunter:</bold> Methodology; validation; writing—review and editing. <bold>Anna Lene Seidler:</bold> Conceptualization; methodology; project administration; supervision; validation; writing—review and editing.</p> <hd id="AN0180736616-26">ACKNOWLEDGMENT</hd> <p>Open access publishing facilitated by The University of Sydney, as part of the Wiley ‐ The University of Sydney agreement via the Council of Australian University Librarians.</p> <hd id="AN0180736616-27">FUNDING INFORMATION</hd> <p>There were no direct sources of funding for this study.</p> <hd id="AN0180736616-28">CONFLICT OF INTEREST STATEMENT</hd> <p>All authors have completed the ICMJE uniform disclosure form at <ulink href="http://www.icmje.org/disclosure-of-interest/">http://www.icmje.org/disclosure-of-interest/</ulink> and declare: ALS is recipient of an NHMRC Investigator Grant (GNT2009432). ACT and KEH are unpaid board members of the Association for Interdisciplinary Meta‐research and Open Science (AIMOS), and recipients of an AIMOS Travel Grant (AUD$1000). TP is the Sydney Node Project Manager for HeSANDA.</p> <hd id="AN0180736616-29">DATA AVAILABILITY STATEMENT</hd> <p>All data collected during the study will be available immediately following publication and with no end date, to anyone and for any purpose. Data will be publicised as an interactive, online dashboard, and published with the article.</p> <hd id="AN0180736616-30">ETHICS STATEMENT</hd> <p>Ethics approval was not required for this cross‐sectional analysis of data sharing policies.</p> <p>GRAPH: Table S1. Extraction form for characteristics of data sharing policies which recommend or require data sharing.</p> <p>GRAPH: Data S1: Supporting information.</p> <ref id="AN0180736616-31"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Petkova E, Antman EM, Troxel AB. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Data Sharing Policies across Health Research Globally: Cross-Sectional Meta-Research Study
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Aidan+C%2E+Tan%22">Aidan C. Tan</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-0354-4006">0000-0003-0354-4006</externalLink>)<br /><searchLink fieldCode="AR" term="%22Angela+C%2E+Webster%22">Angela C. Webster</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-7509-0512">0000-0001-7509-0512</externalLink>)<br /><searchLink fieldCode="AR" term="%22Sol+Libesman%22">Sol Libesman</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-7513-2663">0000-0001-7513-2663</externalLink>)<br /><searchLink fieldCode="AR" term="%22Zijing+Yang%22">Zijing Yang</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-7041-459X">0000-0001-7041-459X</externalLink>)<br /><searchLink fieldCode="AR" term="%22Rani+R%2E+Chand%22">Rani R. Chand</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-0175-3675">0000-0002-0175-3675</externalLink>)<br /><searchLink fieldCode="AR" term="%22Weber+Liu%22">Weber Liu</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-2156-3473">0000-0002-2156-3473</externalLink>)<br /><searchLink fieldCode="AR" term="%22Talia+Palacios%22">Talia Palacios</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-1040-0724">0000-0002-1040-0724</externalLink>)<br /><searchLink fieldCode="AR" term="%22Kylie+E%2E+Hunter%22">Kylie E. Hunter</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-2796-9220">0000-0002-2796-9220</externalLink>)<br /><searchLink fieldCode="AR" term="%22Anna+Lene+Seidler%22">Anna Lene Seidler</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-0027-1623">0000-0002-0027-1623</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Research+Synthesis+Methods%22"><i>Research Synthesis Methods</i></searchLink>. 2024 15(6):1060-1071.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 12
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2024
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Information+Dissemination%22">Information Dissemination</searchLink><br /><searchLink fieldCode="DE" term="%22Data%22">Data</searchLink><br /><searchLink fieldCode="DE" term="%22Health%22">Health</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+Research%22">Medical Research</searchLink><br /><searchLink fieldCode="DE" term="%22Policy%22">Policy</searchLink><br /><searchLink fieldCode="DE" term="%22COVID-19%22">COVID-19</searchLink><br /><searchLink fieldCode="DE" term="%22Pandemics%22">Pandemics</searchLink><br /><searchLink fieldCode="DE" term="%22Guidance%22">Guidance</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Implementation%22">Program Implementation</searchLink><br /><searchLink fieldCode="DE" term="%22Ethics%22">Ethics</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Committees%22">Research Committees</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1002/jrsm.1757
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1759-2879<br />1759-2887
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Data sharing improves the value, synthesis, and integrity of research, but rates are low. Data sharing might be improved if data sharing policies were prominent and actionable at every stage of research. We aimed to systematically describe the epidemiology of data sharing policies across the health research lifecycle. Methods: This was a cross-sectional analysis of the data sharing policies of the largest health research funders, all national ethics committees, all clinical trial registries, the highest-impact medical journals, and all medical research data repositories. Stakeholders' official websites, online reports, and other records were reviewed up to May 2022. The strength and characteristics of their data sharing policies were assessed, including their policies on data sharing intention statements (a.k.a. data accessibility statements) and on data sharing specifically for coronavirus disease studies. Data were manually extracted in duplicate, and policies were descriptively analysed by their stakeholder and characteristics. Results: Nine hundred and thirty-five eligible stakeholders were identified: 110 funders, 124 ethics committees, 18 trial registries, 273 journals, and 410 data repositories. Data sharing was required by 41% (45/110) of funders, no ethics committees or trial registries, 19% (52/273) of journals and 6% (24/410) of data repositories. Among funder types, a higher proportion of private (63%, 35/55) and philanthropic (67%, 4/6) funders required data sharing than public funders (12%, 6/49). Conclusion: Data sharing requirements, and even recommendations, were insufficient across health research. Where data sharing was required or recommended, there was limited guidance on implementation. We describe multiple pathways to improve the implementation of data sharing. Public funders and ethics committees are two stakeholders with particularly important untapped opportunities.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2024
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1447273
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        Value: 10.1002/jrsm.1757
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      – Text: English
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        PageCount: 12
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      – SubjectFull: Information Dissemination
        Type: general
      – SubjectFull: Data
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      – SubjectFull: Health
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      – TitleFull: Data Sharing Policies across Health Research Globally: Cross-Sectional Meta-Research Study
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