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 ve

SUBMITTER: Genevieve LD 

PROVIDER: S-EPMC8459557 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature