Dataset Information

Codifying collegiality: recent developments in data sharing policy in the life sciences.

ABSTRACT: Over the last decade, there have been significant changes in data sharing policies and in the data sharing environment faced by life science researchers. Using data from a 2013 survey of over 1600 life science researchers, we analyze the effects of sharing policies of funding agencies and journals. We also examine the effects of new sharing infrastructure and tools (i.e., third party repositories and online supplements). We find that recently enacted data sharing policies and new sharing infrastructure and tools have had a sizable effect on encouraging data sharing. In particular, third party repositories and online supplements as well as data sharing requirements of funding agencies, particularly the NIH and the National Human Genome Research Institute, were perceived by scientists to have had a large effect on facilitating data sharing. In addition, we found a high degree of compliance with these new policies, although noncompliance resulted in few formal or informal sanctions. Despite the overall effectiveness of data sharing policies, some significant gaps remain: about one third of grant reviewers placed no weight on data sharing plans in their reviews, and a similar percentage ignored the requirements of material transfer agreements. These patterns suggest that although most of these new policies have been effective, there is still room for policy improvement.

SUBMITTER: Pham-Kanter G

PROVIDER: S-EPMC4178158 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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Codifying collegiality: recent developments in data sharing policy in the life sciences.

Pham-Kanter Genevieve G Zinner Darren E DE Campbell Eric G EG

PloS one 20140926 9

Over the last decade, there have been significant changes in data sharing policies and in the data sharing environment faced by life science researchers. Using data from a 2013 survey of over 1600 life science researchers, we analyze the effects of sharing policies of funding agencies and journals. We also examine the effects of new sharing infrastructure and tools (i.e., third party repositories and online supplements). We find that recently enacted data sharing policies and new sharing infrast ...[more]

PMID: 25259842

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Project description:BackgroundMany scholarly journals have established their own data-related policies, which specify their enforcement of data sharing, the types of data to be submitted, and their procedures for making data available. However, except for the journal impact factor and the subject area, the factors associated with the overall strength of the data sharing policies of scholarly journals remain unknown. This study examines how factors, including impact factor, subject area, type of journal publisher, and geographical location of the publisher are related to the strength of the data sharing policy.MethodsFrom each of the 178 categories of the Web of Science's 2017 edition of Journal Citation Reports, the top journals in each quartile (Q1, Q2, Q3, and Q4) were selected in December 2018. Of the resulting 709 journals (5%), 700 in the fields of life, health, and physical sciences were selected for analysis. Four of the authors independently reviewed the results of the journal website searches, categorized the journals' data sharing policies, and extracted the characteristics of individual journals. Univariable multinomial logistic regression analyses were initially conducted to determine whether there was a relationship between each factor and the strength of the data sharing policy. Based on the univariable analyses, a multivariable model was performed to further investigate the factors related to the presence and/or strength of the policy.ResultsOf the 700 journals, 308 (44.0%) had no data sharing policy, 125 (17.9%) had a weak policy, and 267 (38.1%) had a strong policy (expecting or mandating data sharing). The impact factor quartile was positively associated with the strength of the data sharing policies. Physical science journals were less likely to have a strong policy relative to a weak policy than Life science journals (relative risk ratio [RRR], 0.36; 95% CI [0.17-0.78]). Life science journals had a greater probability of having a weak policy relative to no policy than health science journals (RRR, 2.73; 95% CI [1.05-7.14]). Commercial publishers were more likely to have a weak policy relative to no policy than non-commercial publishers (RRR, 7.87; 95% CI, [3.98-15.57]). Journals by publishers in Europe, including the majority of those located in the United Kingdom and the Netherlands, were more likely to have a strong data sharing policy than a weak policy (RRR, 2.99; 95% CI [1.85-4.81]).ConclusionsThese findings may account for the increase in commercial publishers' engagement in data sharing and indicate that European national initiatives that encourage and mandate data sharing may influence the presence of a strong policy in the associated journals. Future research needs to explore the factors associated with varied degrees in the strength of a data sharing policy as well as more diverse characteristics of journals related to the policy strength.

Project description:BackgroundPrecision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap.ObjectiveWe aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences.MethodsWe conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey.ResultsAfter deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences.ConclusionsOur study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.

Dataset Information

Codifying collegiality: recent developments in data sharing policy in the life sciences.

Publications

Codifying collegiality: recent developments in data sharing policy in the life sciences.

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