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,

SUBMITTER: Genevieve LD 

PROVIDER: S-EPMC8131670 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature