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When are researchers willing to share their data? - Impacts of values and uncertainty on open data in academia.

ABSTRACT: BACKGROUND:E-science technologies have significantly increased the availability of data. Research grant providers such as the European Union increasingly require open access publishing of research results and data. However, despite its significance to research, the adoption rate of open data technology remains low across all disciplines, especially in Europe where research has primarily focused on technical solutions (such as Zenodo or the Open Science Framework) or considered only parts of the issue. METHODS AND FINDINGS:In this study, we emphasized the non-technical factors perceived value and uncertainty factors in the context of academia, which impact researchers' acceptance of open data-the idea that researchers should not only publish their findings in the form of articles or reports, but also share the corresponding raw data sets. We present the results of a broad quantitative analysis including N = 995 researchers from 13 large to medium-sized universities in Germany. In order to test 11 hypotheses regarding researchers' intentions to share their data, as well as detect any hierarchical or disciplinary differences, we employed a structured equation model (SEM) following the partial least squares (PLS) modeling approach. CONCLUSIONS:Grounded in the value-based theory, this article proclaims that most individuals in academia embrace open data when the perceived advantages outweigh the disadvantages. Furthermore, uncertainty factors impact the perceived value (consisting of the perceived advantages and disadvantages) of sharing research data. We found that researchers' assumptions about effort required during the data preparation process were diminished by awareness of e-science technologies (such as Zenodo or the Open Science Framework), which also increased their tendency to perceive personal benefits via data exchange. Uncertainty factors seem to influence the intention to share data. Effects differ between disciplines and hierarchical levels.

SUBMITTER: Stieglitz S

PROVIDER: S-EPMC7329060 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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When are researchers willing to share their data? - Impacts of values and uncertainty on open data in academia.

Stieglitz Stefan S Wilms Konstantin K Mirbabaie Milad M Hofeditz Lennart L Brenger Bela B López Ania A Rehwald Stephanie S

PloS one 20200701 7

<h4>Background</h4>E-science technologies have significantly increased the availability of data. Research grant providers such as the European Union increasingly require open access publishing of research results and data. However, despite its significance to research, the adoption rate of open data technology remains low across all disciplines, especially in Europe where research has primarily focused on technical solutions (such as Zenodo or the Open Science Framework) or considered only parts ...[more]

PMID: 32609767

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Project description:Demands are increasingly being made for clinical trialists to actively share individual participant data (IPD) collected from clinical trials using responsible methods that protect the confidentiality and privacy of clinical trial participants. Clinical trialists, particularly those receiving public funding, are often concerned about the additional time and money that data-sharing activities will require, but few published empirical data are available to help inform these decisions. We sought to evaluate the activity and resources required to prepare anonymised IPD from a clinical trial in anticipation of a future data-sharing request.Data from two UK publicly funded clinical trials were used for this exercise: 2437 participants with epilepsy recruited from 90 hospital outpatient clinics in the SANAD trial and 146 children with neuro-developmental problems recruited from 18 hospitals in the MENDS trial. We calculated the time and resources required to prepare each anonymised dataset and assemble a data pack ready for sharing.The older SANAD trial (published 2007) required 50 hours of staff time with a total estimated associated cost of £3185 whilst the more recently completed MENDS trial (published 2012) required 39.5 hours of staff time with total estimated associated cost of £2540.Clinical trial researchers, funders and sponsors should consider appropriate resourcing and allow reasonable time for preparing IPD ready for subsequent sharing. This process would be most efficient if prospectively built into the standard operational design and conduct of a clinical trial. Further empirical examples exploring the resource requirements in other settings is recommended.SANAD: International Standard Randomised Controlled Trials Registry: ISRCTN38354748 . Registered on 25 April 2003.EU Clinical Trials Register Eudract 2006-004025-28 . Registered on 16 May 2007. International Standard Randomised Controlled Trials Registry: ISRCTN05534585 /MREC 07/MRE08/43. Registered on 26 January 2007.

Project description:BackgroundReal-world data (RWD) privacy is an increasingly complex topic within the scope of personalized medicine, as it implicates several sources of data.ObjectiveTo assess how privacy-related experiences, when adjusted for age and education level, may shape adult research participants' willingness to share various sources of real-world data with researchers.MethodsAn electronic survey was conducted in April 2021 among adults (≥18 years of age) registered in ResearchMatch, a national health research registry. Descriptive analyses were conducted to assess survey participant demographics. Logistic regression was conducted to assess the association between participants' five distinct privacy-related experiences and their willingness to share each of the 19 data sources with researchers, adjusting for education level and age range.ResultsA total of 598 ResearchMatch adults were contacted and 402 completed the survey. Most respondents were over the age of 51 years (49% total) and held a master's or bachelor's degree (63% total). Over half of participants (54%) had their account accessed by someone without their permission. Almost half of participants (49%) reported the privacy of their personal information being violated. Analyses showed that, when adjusted for age range and education level, participants whose reputations were negatively affected as a result of information posted online were more likely to share electronic medical record data (OR = 2.074, 95% CI: 0.986-4.364) and genetic data (OR = 2.302, 95% CI: 0.894-5.93) versus those without this experience. Among participants who had an unpleasant experience as a result of giving out information online, those with some college/associates/trade school compared to those with a doctoral or other terminal degree were significantly more willing to share genetic data (OR = 1.064, 95% CI: 0.396-2.857). Across all privacy-related experiences, participants aged 18 to 30 were significantly more likely than those over 60 years to share music streaming data, ridesharing history data, and voting history data. Additionally, across all privacy-related experiences, those with a high school education were significantly more likely than those with a doctorate or other terminal degree to share credit card statement data.ConclusionsThis study offers the first insights into how privacy-related experiences, adjusted for age range and education level, may shape ResearchMatch participants' willingness to share several sources of real-world data sources with precision medicine researchers. Future work should further explore these insights.

Project description:BackgroundAdvances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors.ObjectiveThis study aimed to assess healthy non-Hispanic white mothers' attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers.MethodsThis cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers' willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous.ResultsThe results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers' health care provider status, their motivation, and their privacy concerns. Mothers' concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers' motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99).ConclusionsThe findings of this study suggest that mothers' privacy concerns affect their decisions to share sensitive data. However, mothers' access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.

Dataset Information

When are researchers willing to share their data? - Impacts of values and uncertainty on open data in academia.

Publications

When are researchers willing to share their data? - Impacts of values and uncertainty on open data in academia.

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