Dataset Information

It's all in the timing: calibrating temporal penalties for biomedical data sharing.

ABSTRACT: Objective:Biomedical science is driven by datasets that are being accumulated at an unprecedented rate, with ever-growing volume and richness. There are various initiatives to make these datasets more widely available to recipients who sign Data Use Certificate agreements, whereby penalties are levied for violations. A particularly popular penalty is the temporary revocation, often for several months, of the recipient's data usage rights. This policy is based on the assumption that the value of biomedical research data depreciates significantly over time; however, no studies have been performed to substantiate this belief. This study investigates whether this assumption holds true and the data science policy implications. Methods:This study tests the hypothesis that the value of data for scientific investigators, in terms of the impact of the publications based on the data, decreases over time. The hypothesis is tested formally through a mixed linear effects model using approximately 1200 publications between 2007 and 2013 that used datasets from the Database of Genotypes and Phenotypes, a data-sharing initiative of the National Institutes of Health. Results:The analysis shows that the impact factors for publications based on Database of Genotypes and Phenotypes datasets depreciate in a statistically significant manner. However, we further discover that the depreciation rate is slow, only ?10% per year, on average. Conclusion:The enduring value of data for subsequent studies implies that revoking usage for short periods of time may not sufficiently deter those who would violate Data Use Certificate agreements and that alternative penalty mechanisms may need to be invoked.

SUBMITTER: Xia W

PROVIDER: S-EPMC6080807 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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It's all in the timing: calibrating temporal penalties for biomedical data sharing.

Xia Weiyi W Wan Zhiyu Z Yin Zhijun Z Gaupp James J Liu Yongtai Y Clayton Ellen Wright EW Kantarcioglu Murat M Vorobeychik Yevgeniy Y Malin Bradley A BA

Journal of the American Medical Informatics Association : JAMIA 20180101 1

<h4>Objective</h4>Biomedical science is driven by datasets that are being accumulated at an unprecedented rate, with ever-growing volume and richness. There are various initiatives to make these datasets more widely available to recipients who sign Data Use Certificate agreements, whereby penalties are levied for violations. A particularly popular penalty is the temporary revocation, often for several months, of the recipient's data usage rights. This policy is based on the assumption that the v ...[more]

PMID: 29036325

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Project description:BackgroundHealth care interactions may require patients to share with a physician information they believe but is incorrect. While a key piece of physicians' work is educating their patients, people's concerns of being seen as uninformed or incompetent by physicians may lead them to think that sharing incorrect health beliefs comes with a penalty. We tested people's perceptions of patients who share incorrect information and how these perceptions vary by the reasonableness of the belief and its centrality to the patient's disease.DesignWe recruited 399 United States Prolific.co workers (357 retained after exclusions), 200 Prolific.co workers who reported having diabetes (139 after exclusions), and 244 primary care physicians (207 after exclusions). Participants read vignettes describing patients with type 2 diabetes sharing health beliefs that were central or peripheral to the management of diabetes. Beliefs included true and incorrect statements that were reasonable or unreasonable to believe. Participants rated how a doctor would perceive the patient, the patient's ability to manage their disease, and the patient's trust in doctors.ResultsParticipants rated patients who shared more unreasonable beliefs more negatively. There was an extra penalty for incorrect statements central to the patient's diabetes management (sample 1). These results replicated for participants with type 2 diabetes (sample 2) and physician participants (sample 3).ConclusionsParticipants believed that patients who share incorrect information with their physicians will be penalized for their honesty. Physicians need to be educated on patients' concerns so they can help patients disclose what may be most important for education.HighlightsUnderstanding how people think they will be perceived in a health care setting can help us understand what they may be wary to share with their physicians.People think that patients who share incorrect beliefs will be viewed negatively.Helping patients share incorrect beliefs can improve care.

Project description:ObjectiveTo explore the implementation of the International Committee of Medical Journal Editors (ICMJE) data-sharing policy which came into force on 1 July 2018 by ICMJE-member journals and by ICMJE-affiliated journals declaring they follow the ICMJE recommendations.DesignA cross-sectional survey of data-sharing policies in 2018 on journal websites and in data-sharing statements in randomised controlled trials (RCTs).SettingICMJE website; PubMed/Medline.Eligibility criteriaICMJE-member journals and 489 ICMJE-affiliated journals that published an RCT in 2018, had an accessible online website and were not considered as predatory journals according to Beall's list. One hundred RCTs for member journals and 100 RCTs for affiliated journals with a data-sharing policy, submitted after 1 July 2018.Main outcome measuresThe primary outcome for the policies was the existence of a data-sharing policy (explicit data-sharing policy, no data-sharing policy, policy merely referring to ICMJE recommendations) as reported on the journal website, especially in the instructions for authors. For RCTs, our primary outcome was the intention to share individual participant data set out in the data-sharing statement.ResultsEight (out of 14; 57%) member journals had an explicit data-sharing policy on their website (three were more stringent than the ICMJE requirements, one was less demanding and four were compliant), five (35%) additional journals stated that they followed the ICMJE requirements, and one (8%) had no policy online. In RCTs published in these journals, there were data-sharing statements in 98 out of 100, with expressed intention to share individual patient data reaching 77 out of 100 (77%; 95% CI 67% to 85%). One hundred and forty-five (out of 489) ICMJE-affiliated journals (30%; 26% to 34%) had an explicit data-sharing policy on their website (11 were more stringent than the ICMJE requirements, 85 were less demanding and 49 were compliant) and 276 (56%; 52% to 61%) merely referred to the ICMJE requirements. In RCTs published in affiliated journals with an explicit data-sharing policy, data-sharing statements were rare (25%), and expressed intentions to share data were found in 22% (15% to 32%).ConclusionThe implementation of ICMJE data-sharing requirements in online journal policies was suboptimal for ICMJE-member journals and poor for ICMJE-affiliated journals. The implementation of the policy was good in member journals and of concern for affiliated journals. We suggest the conduct of continuous audits of medical journal data-sharing policies in the future.RegistrationThe protocol was registered before the start of the research on the Open Science Framework (https://osf.io/n6whd/).

Dataset Information

It's all in the timing: calibrating temporal penalties for biomedical data sharing.

Publications

It's all in the timing: calibrating temporal penalties for biomedical data sharing.

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