Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

Area of Science:

• Health research
• Open science
• Data sharing

Background:

• The health research landscape is shifting towards collectivism, emphasizing open science and data sharing.
• Systemic contradictions currently impede the fair sharing of health data, challenging collaborative endeavors.
• This study investigates these systemic barriers from the perspective of Swiss stakeholders.

Purpose of the Study:

• To explore systemic barriers to fair health data sharing.
• To understand the perspectives of Swiss healthcare stakeholders on these barriers.

Main Methods:

• Qualitative study employing purposive and snowball sampling.
• Recruited 48 experts from Swiss healthcare research, policy-making, and health data enterprises.
• Conducted semi-structured interviews, followed by verbatim transcription and theoretical thematic analysis.

Main Results:

• Identified two primary themes hindering fair health data sharing: hypercompetition and legal uncertainty.
• Hypercompetition in academia fosters individualism, contradicting the data sharing movement.
• Legal uncertainty surrounding data sharing legislation creates unreasonable burdens for researchers.

Conclusions:

• Hypercompetition and legal ambiguity in Switzerland obstruct health data sharing for secondary research.
• These systemic issues push researchers towards individualism, undermining collaborative science.
• Addressing these barriers is crucial for advancing open science and fair data practices in health research.