Stakeholders' views on data sharing in multicenter studies.

Area of Science:

• Health Services Research
• Comparative Effectiveness Research
• Data Science

Background:

• Multicenter comparative effectiveness research (CER) relies on data sharing across institutions.
• Understanding stakeholder perspectives is crucial for successful data sharing initiatives.
• Privacy-preserving methods are increasingly important for sensitive health data.

Purpose of the Study:

• To explore stakeholder views on data sharing in multicenter CER.
• To assess the perceived value of privacy-protecting methods in CER data sharing.

Main Methods:

• Conducted semistructured interviews with diverse US stakeholder groups.
• Interviewed patients, researchers, IRB/regulatory staff, governance experts, and healthcare leaders.
• Analyzed qualitative data to identify key themes influencing data sharing decisions.

Main Results:

• Perceived research benefits strongly encouraged data sharing, while cost and security risks were deterrents.
• Privacy-protecting methods, particularly those sharing summary data, were viewed favorably but with concerns.
• Concerns included increased costs and potential compromises to research validity with privacy-preserving methods.

Conclusions:

• Stakeholders are generally amenable to data sharing in multicenter studies.
• Data sharing is more likely when the value of the research is evident and security risks are mitigated.
• Further development is needed to address cost and validity concerns associated with privacy-preserving data sharing methods.