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Funders' data-sharing policies in therapeutic research: A survey of commercial and non-commercial funders.

ABSTRACT: BACKGROUND:Funders are key players in supporting randomized controlled trial (RCT) data-sharing. This research aimed to describe commercial and non-commercial funders' data-sharing policies and to assess the compliance of funded RCTs with the existing data-sharing policies. METHODS AND FINDINGS:Funders of clinical research having funded at least one RCT in the years 2016 to 2018 were surveyed. All 78 eligible non-commercial funders retrieved from the Sherpa/Juliet Initiative website and a random sample of 100 commercial funders selected from pharmaceutical association member lists (LEEM, IFPMA, EFPIA) and the top 100 pharmaceutical companies in terms of drug sales were included. Thirty (out of 78; 38%) non-commercial funders had a data-sharing policy with eighteen (out of 30, 60%) making data-sharing mandatory and twelve (40%) encouraging data-sharing. Forty-one (out of 100; 41%) of commercial funders had a data-sharing policy. Among funders with a data-sharing policy, a survey of two random samples of 100 RCTs registered on Clinicaltrial.gov, data-sharing statements were present for seventy-seven (77%, 95% IC [67%-84%]) and eighty-one (81% [72% - 88%]) of RCTs funded by non-commercial and commercial funders respectively. Intention to share data was expressed in 12% [7%-20%] and 59% [49%- 69%] of RCTs funded by non-commercial and commercial funders respectively. CONCLUSIONS:This survey identified suboptimal performances of funders in setting up data-sharing policies. For those with a data-sharing policy, the implementation of the policy in study registration was limited for commercial funders and of concern for non-commercial funders. The limitations of the present study include its cross-sectional nature, since data-sharing policies are continuously changing. We call for a standardization of policies with a strong evaluation component to make sure that, when in place, these policies are effective.

SUBMITTER: Gaba JF

PROVIDER: S-EPMC7446799 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Funders' data-sharing policies in therapeutic research: A survey of commercial and non-commercial funders.

Gaba Jeanne Fabiola JF Siebert Maximilian M Dupuy Alain A Moher David D Naudet Florian F

PloS one 20200820 8

<h4>Background</h4>Funders are key players in supporting randomized controlled trial (RCT) data-sharing. This research aimed to describe commercial and non-commercial funders' data-sharing policies and to assess the compliance of funded RCTs with the existing data-sharing policies.<h4>Methods and findings</h4>Funders of clinical research having funded at least one RCT in the years 2016 to 2018 were surveyed. All 78 eligible non-commercial funders retrieved from the Sherpa/Juliet Initiative websi ...[more]

PMID: 32817724

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Project description:BackgroundData sharing is commonly seen as beneficial for science but is not yet common practice. Research funding agencies are known to play a key role in promoting data sharing, but German funders' data sharing policies appear to lag behind in international comparison. This study aims to answer the question of how German data sharing experts inside and outside funding agencies perceive and evaluate German funders' data sharing policies and overall efforts to promote data sharing.MethodsThis study is based on sixteen guided expert interviews with representatives of German funders and German research data experts from stakeholder organisations, who shared their perceptions of German' funders efforts to promote data sharing. By applying the method of qualitative content analysis to our interview data, we categorise and describe noteworthy aspects of the German data sharing policy landscape and illustrate our findings with interview passages.ResultsWe present our findings in five sections to distinguish our interviewees' perceptions on a) the status quo of German funders' data sharing policies, b) the role of funders in promoting data sharing, c) current and potential measures by funders to promote data sharing, d) general barriers to those measures, and e) the implementation of more binding data sharing requirements.Discussion and conclusionAlthough funders are perceived to be important promoters and facilitators of data sharing throughout our interviews, only few German funding agencies have data sharing policies in place. Several interviewees stated that funders could do more, for example by providing incentives for data sharing or by introducing more concrete policies. Our interviews suggest the academic freedom of grantees is widely perceived as an obstacle for German funders in introducing mandatory data sharing requirements. However, some interviewees stated that stricter data sharing requirements could be justified if data sharing is a part of good scientific practice.

Project description:BACKGROUND:There is wide agreement in the biomedical research community that research data sharing is a primary ingredient for ensuring that science is more transparent and reproducible. Publishers could play an important role in facilitating and enforcing data sharing; however, many journals have not yet implemented data sharing policies and the requirements vary widely across journals. This study set out to analyze the pervasiveness and quality of data sharing policies in the biomedical literature. METHODS:The online author's instructions and editorial policies for 318 biomedical journals were manually reviewed to analyze the journal's data sharing requirements and characteristics. The data sharing policies were ranked using a rubric to determine if data sharing was required, recommended, required only for omics data, or not addressed at all. The data sharing method and licensing recommendations were examined, as well any mention of reproducibility or similar concepts. The data was analyzed for patterns relating to publishing volume, Journal Impact Factor, and the publishing model (open access or subscription) of each journal. RESULTS:A total of 11.9% of journals analyzed explicitly stated that data sharing was required as a condition of publication. A total of 9.1% of journals required data sharing, but did not state that it would affect publication decisions. 23.3% of journals had a statement encouraging authors to share their data but did not require it. A total of 9.1% of journals mentioned data sharing indirectly, and only 14.8% addressed protein, proteomic, and/or genomic data sharing. There was no mention of data sharing in 31.8% of journals. Impact factors were significantly higher for journals with the strongest data sharing policies compared to all other data sharing criteria. Open access journals were not more likely to require data sharing than subscription journals. DISCUSSION:Our study confirmed earlier investigations which observed that only a minority of biomedical journals require data sharing, and a significant association between higher Impact Factors and journals with a data sharing requirement. Moreover, while 65.7% of the journals in our study that required data sharing addressed the concept of reproducibility, as with earlier investigations, we found that most data sharing policies did not provide specific guidance on the practices that ensure data is maximally available and reusable.

Project description:BackgroundA significant gap persists between evidence from research and its use in practice. Research funders, important actors in the health research system, can help reduce this gap by initiating dissemination and implementation (D&I) activities. The specific types of D&I activities funders currently lead have not been explored thoroughly. The Ensuring Value in Research (EViR) Funders' Forum-an international collaboration of health-related research funders-was established in 2017 to address research waste issues and increase the value of research. The Forum surveyed funders to learn about their D&I practices and challenges.MethodsWe distributed a five-item exploratory survey to participating funders in August 2018. The results informed the development of a survey instrument, distributed in June 2019. The survey instrument contained 15 items prompting respondents to categorize and describe their level of effort in six practice areas: release of findings, dissemination, knowledge exchange/partnering, implementation, building capacity, and implementation research. In addition, funders were asked to describe examples of their practices in detail. Thirty-one funders completed the survey instrument, a 58% response rate.ResultsMost funders regard D&I as a high priority, but funders vary in levels of activity per practice area. Over half of respondents reported that they have at least some activity in all D&I practice areas surveyed, with the exception of implementation research. The vast majority indicated some or significant activity in release of findings (97%) and dissemination (87%). Nearly one-fifth of funders (19%) indicated that implementation is outside their remit, and 26% indicated that implementation research is outside their remit. Survey respondents shared a broad range of examples of activities in each practice area. Lack of evidence for successful approaches and measuring impact were named frequently as challenges and as potential areas for collaboration.ConclusionsAlthough models of dissemination and implementation vary across organizations, the majority of funders indicated that D&I of research findings is a priority. Funders indicated a need for evidence on effectiveness of various approaches to D&I. Increased collaboration between funders, including sharing good practices, will increase our collective learning and knowledge development.

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Funders' data-sharing policies in therapeutic research: A survey of commercial and non-commercial funders.

Publications

Funders' data-sharing policies in therapeutic research: A survey of commercial and non-commercial funders.

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