Individual notions of fair data sharing from the perspectives of Swiss stakeholders

Abstract

Background The 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. Methods Using 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. Results Three 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. Conclusions This 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.

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

“…• Who: identity of data overseers [11,31,41,49,53,76,83,85,98,[100][101][102]115] and data users [11,31,33,34,36, about biobanking generally centered around the control and ownership of biological [11,31,52,[73][74][75][76][77][79][80][81]86,91,113,114,[40][41][42]49,[52][53][54]57,59,60, samples and data, especially with respect to potential misuse by insurers, the government and other third parties" (Joly et al [64] on the views of members of the public). 117,118] • "I'm just trying to say there is this framework, you know we say that there is a governance system in place which will protect the patient and we can look at them…”

“…What and what for: type of data used and type of secondary use like we do the financial institutions and we're quite happy with how they exist, well [53,54,59,60,62,75,86,94,108-110, they're quite well developed. There's a framework around this and we want some 117,118] assurance" (patient with a rare disease [67]).…”

“…With whom: data-sharing practices [59,60,65,90,97,105,106,111,118] • "Well, I did not know how freely they could share the information, that they are actually sharing them with payers. So, something needs to be done with that because • How: sources of funding [95,96], safeguards [34,53,73,103,104,112] we have a right to know where our information is going [...]" (oncology patient [114]).…”

“…Data linkage [53,83,96,103,132] • Types of data sets [34,62] pects [33,34,38, maintain that type of access, you know, just general [questions]" (patient [40]). 118,120,130,132,133] details on how the data would be transferred. Some patients expressed uncertainty about current practices; as one patient said, 'I don't know who has access to my information'" (Mazor et al [106] on the views of patients).…”

“…Duration of data storage and how they are stored [78,93,95,97,118] location.' I would want specifics" (patient [73]).…”