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Psychometrics Anonymous: Does a Transparent Data Sharing Policy Affect Data Collection?

ABSTRACT: As researchers, we are advised to share our data to improve transparency and increase the reproducibility of experiments. Simultaneously, making data freely accessible can raise ethical questions regarding the participants' privacy. We first outline the challenges regarding "open data" for researchers in light of the GDPR. Then, we turn to the impact of an open-access data sharing policy on the participants: could the participants' knowledge about the future use of the data alter the data itself? Through two pre-registered studies (N = 193, collected on campus and N = 543, online participation), we investigate whether disclosing that anonymized data will be publicly shared vs. not shared influences a potential participants' intention to take part in the study. Using both frequentist and Bayesian analysis, we conclude towards an absence of effect of a difference in data sharing policy on scores in the Big Five questionnaire and social desirability, careless response behavior, and results in the anchoring paradigm. In the second study, a lexicometric analysis of participants' reactions to openly sharing data reveals a readiness to share data and support transparency under the condition of preserved anonymity. Hence, if anonymity can be ensured, there seems to be no methodological or ethical drawback in transparent and open data sharing policies for many psychological studies.

SUBMITTER: Eberlen JC

PROVIDER: S-EPMC6753307 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Psychometrics Anonymous: Does a Transparent Data Sharing Policy Affect Data Collection?

Eberlen Julia Charlotte JC Nicaise Emmanuel E Leveaux Sarah S Mora Youri Léon YL Klein Olivier O

Psychologica Belgica 20190919 1

As researchers, we are advised to share our data to improve transparency and increase the reproducibility of experiments. Simultaneously, making data freely accessible can raise ethical questions regarding the participants' privacy. We first outline the challenges regarding "open data" for researchers in light of the GDPR. Then, we turn to the impact of an open-access data sharing policy on the participants: could the participants' knowledge about the future use of the data alter the data itself ...[more]

PMID: 31576230

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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.

Project description:INTRODUCTION:The digitalization of medicine has led to a considerable growth of heterogeneous health datasets, which could improve healthcare research if integrated into the clinical life cycle. This process requires, amongst other things, the harmonization of these datasets, which is a prerequisite to improve their quality, re-usability and interoperability. However, there is a wide range of factors that either hinder or favor the harmonized collection, sharing and linkage of health data. OBJECTIVE:This systematic review aims to identify barriers and facilitators to health data harmonization-including data sharing and linkage-by a comparative analysis of studies from Denmark and Switzerland. METHODS:Publications from PubMed, Web of Science, EMBASE and CINAHL involving cross-institutional or cross-border collection, sharing or linkage of health data from Denmark or Switzerland were searched to identify the reported barriers and facilitators to data harmonization. RESULTS:Of the 345 projects included, 240 were single-country and 105 were multinational studies. Regarding national projects, a Swiss study reported on average more barriers and facilitators than a Danish study. Barriers and facilitators of a technical nature were most frequently reported. CONCLUSION:This systematic review gathered evidence from Denmark and Switzerland on barriers and facilitators concerning data harmonization, sharing and linkage. Barriers and facilitators were strictly interrelated with the national context where projects were carried out. Structural changes, such as legislation implemented at the national level, were mirrored in the projects. This underlines the impact of national strategies in the field of health data. Our findings also suggest that more openness and clarity in the reporting of both barriers and facilitators to data harmonization constitute a key element to promote the successful management of new projects using health data and the implementation of proper policies in this field. Our study findings are thus meaningful beyond these two countries.

Project description:ObjectivesUK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences.Design/setting/interventions/outcomesPre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data.ParticipantsOpen to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.ResultsMost (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19.ConclusionsSupport for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support.Trial registration numberISRCTN37444142.

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Psychometrics Anonymous: Does a Transparent Data Sharing Policy Affect Data Collection?

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Psychometrics Anonymous: Does a Transparent Data Sharing Policy Affect Data Collection?

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