Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Geneviève, Lester Darryl; Martani, Andrea; Perneger, Thomas; Wangmo, Tenzin; Elger, Bernice Simone

doi:10.3389/fpubh.2021.669463

Cited by 9 publications

(6 citation statements)

References 44 publications

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“…The existing hurdles for researchers to share data are manifold and include ethical, legal, economic, or motivational barriers [ 18 – 24 ]. Researchers often lack incentives to share data, are unaware of the necessary procedures, or even feel the need to withhold data to advance their careers [ 1 , 18 , 25 , 26 ].…”

Section: Introductionmentioning

confidence: 99%

Neither carrots nor sticks? Challenges surrounding data sharing from the perspective of research funding agencies—A qualitative expert interview study

et al. 2022

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Background Data Sharing is widely recognised as crucial for accelerating scientific research and improving its quality. However, data sharing is still not a common practice. Funding agencies tend to facilitate the sharing of research data by both providing incentives and requiring data sharing as part of their policies and conditions for awarding grants. The goal of our article is to answer the following question: What challenges do international funding agencies see when it comes to their own efforts to foster and implement data sharing through their policies? Methods We conducted a series of sixteen guideline-based expert interviews with representatives of leading international funding agencies. As contact persons for open science at their respective agencies, they offered their perspectives and experiences concerning their organisations’ data sharing policies. We performed a qualitative content analysis of the interviews and categorised the challenges perceived by funding agencies. Results We identify and illustrate six challenges surrounding data sharing policies as perceived by leading funding agencies: The design of clear policies, monitoring of compliance, sanctions for non-compliance, incentives, support, and limitations for funders’ own capabilities. However, our interviews also show how funders approach potential solutions to overcome these challenges, for example by coordinating with other agencies or adjusting grant evaluation metrics to incentivise data sharing. Discussion and conclusion Our interviews point to existing flaws in funders’ data sharing policies, such as a lack of clarity, a lack of monitoring of funded researchers’ data sharing behaviour, and a lack of incentives. A number of agencies could suggest potential solutions but often struggle with the overall complexity of data sharing and the implementation of these measures. Funders cannot solve each challenge by themselves, but they can play an active role and lead joint efforts towards a culture of data sharing.

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Section: Introductionmentioning

confidence: 99%

Neither carrots nor sticks? Challenges surrounding data sharing from the perspective of research funding agencies—A qualitative expert interview study

et al. 2022

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“…The application of big data transcends many contexts. As our review shows, scholars have adopted OD in industrial applications (Huang et al , 2021), entrepreneurship (Aridi et al , 2021); blockchain (Hu et al , 2021), vehicle design (Urquhart et al , 2021) and health (Geneviève et al , 2021; Ochs et al , 2021). Our findings make it quite challenging to state which domains enjoy the most research output.…”

Section: Resultsmentioning

confidence: 99%

The composition of data economy: a bibliometric approach and TCCM framework of conceptual, intellectual and social structure

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et al. 2022

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Purpose The data economy mainly relies on the surveillance capitalism business model, enabling companies to monetize their data. The surveillance allows for transforming private human experiences into behavioral data that can be harnessed in the marketing sphere. This study aims to focus on investigating the domain of data economy with the methodological lens of quantitative bibliometric analysis of published literature. Design/methodology/approach The bibliometric analysis seeks to unravel trends and timelines for the emergence of the data economy, its conceptualization, scientific progression and thematic synergy that could predict the future of the field. A total of 591 data between 2008 and June 2021 were used in the analysis with the Biblioshiny app on the web interfaced and VOSviewer version 1.6.16 to analyze data from Web of Science and Scopus. Findings This study combined findable, accessible, interoperable and reusable (FAIR) data and data economy and contributed to the literature on big data, information discovery and delivery by shedding light on the conceptual, intellectual and social structure of data economy and demonstrating data relevance as a key strategic asset for companies and academia now and in the future. Research limitations/implications Findings from this study provide a steppingstone for researchers who may engage in further empirical and longitudinal studies by employing, for example, a quantitative and systematic review approach. In addition, future research could expand the scope of this study beyond FAIR data and data economy to examine aspects such as theories and show a plausible explanation of several phenomena in the emerging field. Practical implications The researchers can use the results of this study as a steppingstone for further empirical and longitudinal studies. Originality/value This study confirmed the relevance of data to society and revealed some gaps to be undertaken for the future.

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“…As part of this larger project, several activities were conducted, including: a systematic review to identify the main barriers and facilitators to health data processing and harmonisation; 16 analyses of the interplay between data protection law and data sharing; 17 , 18 analyses of how ethics bears on the exchange of health data; 19 , 20 and interviews with more than 60 stakeholders practically involved in the health data infrastructure from both Switzerland and Denmark. 13 , 21 , 22 As a result of these activities, we gathered many insights on the state of the Swiss health data landscape, on the key challenges at the important crossroad where it stands, and on potential ways how to tackle them. To further contribute to the policy debate in our context, as well as to inform the policymaking of other countries who face similar issues in the field of digital health, we aimed at specifying and narrowing down the scope of proposals how to concretely facilitate the secondary use of data for research.…”

Section: Methodsmentioning

confidence: 99%

“…Contributors to this situation include not only the fact that Swiss researchers are sometimes ill-equipped to navigate through the multitude of cantonal data protection regulations and the federal data protection law, and consequently preferred to err on the side of caution by restricting data sharing activities, but also the multitude of regulatory authorities (e.g., cantonal data protection officers, research ethics committees, and federal institutions) having different interpretations of the same piece of legislation. 13 …”

Section: Introductionmentioning

confidence: 99%

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland

et al. 2023

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Introduction Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate – from ethico-legal and socio-cultural perspectives – the sharing and reuse of data for research purposes in Switzerland. Methods A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. Results First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. Conclusions After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.

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Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Cited by 9 publications

References 44 publications

Neither carrots nor sticks? Challenges surrounding data sharing from the perspective of research funding agencies—A qualitative expert interview study

Neither carrots nor sticks? Challenges surrounding data sharing from the perspective of research funding agencies—A qualitative expert interview study

The composition of data economy: a bibliometric approach and TCCM framework of conceptual, intellectual and social structure

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland

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