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Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders.

ABSTRACT: Introduction: Health research is gradually embracing a more collectivist approach, fueled by a new movement of open science, data sharing and collaborative partnerships. However, the existence of systemic contradictions hinders the sharing of health data and such collectivist endeavor. Therefore, this qualitative study explores these systemic barriers to a fair sharing of health data from the perspectives of Swiss stakeholders. Methods: Purposive and snowball sampling were used to recruit 48 experts active in the Swiss healthcare domain, from the research/policy-making field and those having a high position in a health data enterprise (e.g., health register, hospital IT data infrastructure or a national health data initiative). Semi-structured interviews were then conducted, audio-recorded, verbatim transcribed with identifying information removed to guarantee the anonymity of participants. A theoretical thematic analysis was then carried out to identify themes and subthemes related to the topic of systemic fairness for sharing health data. Results: Two themes related to the topic of systemic fairness for sharing health data were identified, namely (i) the hypercompetitive environment and (ii) the legal uncertainty blocking data sharing. The theme, hypercompetitive environment was further divided into two subthemes, (i) systemic contradictions to fair data sharing and the (ii) need of fair systemic attribution mechanisms. Discussion: From the perspectives of Swiss stakeholders, hypercompetition in the Swiss academic system is hindering the sharing of health data for secondary research purposes, with the downside effect of influencing researchers to embrace individualism for career opportunities, thereby opposing the data sharing movement. In addition, there was a perceived sense of legal uncertainty from legislations governing the sharing of health data, which adds unreasonable burdens on individual researchers, who are often unequipped to deal with such facets of their data sharing activities.

SUBMITTER: Genevieve LD

PROVIDER: S-EPMC8131670 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThe meaningful sharing of health data between different stakeholders is central to the advancement of science and to improve care offered to individual patients. However, it is important that the interests of individual stakeholders involved in this data sharing ecosystem are taken into account to ensure fair data sharing practices. In this regard, this qualitative study investigates such practices from the perspectives of a subset of relevant Swiss expert stakeholders, using a distributive justice lens.MethodsUsing purposive and snowball sampling methodologies, 48 expert stakeholders from the Swiss healthcare and research domains were recruited for semi-structured interviews. After the experts had consented, the interviews were audio-recorded and transcribed verbatim, but omitting identifying information to ensure confidentiality and anonymity. A thematic analysis using a deductive approach was conducted to identify fair data sharing practices for secondary research purposes. Themes and subthemes were then identified and developed during the analysis.ResultsThree distributive justice themes were identified in the data sharing negotiation processes, and these are: (i) effort, which was subcategorized into two subthemes (i.e. a claim to data reciprocity and other reciprocal advantages, and a claim to transparency on data re-use), (ii) compensation, which was subcategorized into two subthemes (i.e. a claim to an academic compensation and a claim to a financial compensation), and lastly, (iii) contribution, i.e. the significance of data contributions should be matched with a corresponding reward.ConclusionsThis qualitative study provides insights, which could inform policy-making on claims and incentives that encourage Swiss expert stakeholders to share their datasets. Importantly, several claims have been identified and justified under the basis of distributive justice principles, whilst some are more debatable and likely insufficient in justifying data sharing activities. Nonetheless, these claims should be taken seriously and discussed more broadly. Indeed, promoting health research while ensuring that healthcare systems guarantee better services, it is paramount to ensure that solutions developed are sustainable, provide fair criteria for academic careers and promote the sharing of high quality data to advance science.

Project description:South Africa (SA) is reforming its health system in preparation for an anticipated national health insurance (NHI) scheme that aims to improve the delivery of affordable, equitable, accessible health care. Public health (PH) language is explicit in the policy and skilled PH professionals would be expected to play a key role in its implementation. In South Africa, training of doctors as Public Health Medicine (PHM) specialists is funded by the state, yet there are few positions for PHM specialists in the health services. We explored stakeholders' perspectives about this absence, and their views on PHM specialist' roles and contribution in an era of health reform. A qualitative study was conducted in 2012-13, using in-depth interviews with thematic analysis, which elicited perspectives of 31 key stakeholders nationally reflecting diverse employer and institutional backgrounds. While some were surprised by the absence of PH professionals in SA's health system, most agreed the reason was due to factors internal to the profession, such as its low profile and uncertain identity. External factors such as legislation and political preferences for health managers impacted on the employment of PH professionals. However, given the competencies required to implement an ambitious restructuring of the health sector, all believed that PH and PHM personnel were vital. In view of the health system's dominant curative orientation, embedding PH personnel in the services should ensure that health protection, promotion and prevention strategies will inform health priorities. This study, the first known from a low and middle-income country, contributes to the international literature about the identity and roles of PHM physicians, who are versatile professionals with broad skills-sets. In SA, through consultation with health sector employers about potential roles, curricular redesign and trainee recruitment, PHM can graduate fit-for-purpose specialists to work in a range of institutions to address health system reform.

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Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders.

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