Stakeholders' views on data sharing in multicenter studies

J Comp Eff Res. 2017 Sep;6(6):537-547. doi: 10.2217/cer-2017-0009. Epub 2017 Aug 14.


Aim: To understand stakeholders' views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods.

Materials & methods: Semistructured interviews with five US stakeholder groups.

Results: We completed 11 interviews, involving patients (n = 15), researchers (n = 10), Institutional Review Board and regulatory staff (n = 3), multicenter research governance experts (n = 2) and healthcare system leaders (n = 4). Perceptions of the benefits and value of research were the strongest influences toward data sharing; cost and security risks were primary influences against sharing. Privacy-protecting methods that share summary-level data were acknowledged as being appealing, but there were concerns about increased cost and potential loss of research validity.

Conclusion: Stakeholders were open to data sharing in multicenter studies that offer value and minimize security risks.

Keywords: PCORnet; comparative effectiveness research; data sharing; distributed research networks; electronic databases; multicenter studies; privacy-protecting methods.

MeSH terms

  • Attitude of Health Personnel*
  • Comparative Effectiveness Research
  • Confidentiality
  • Costs and Cost Analysis
  • Female
  • Humans
  • Information Dissemination*
  • Male
  • Middle Aged
  • Multicenter Studies as Topic
  • Perception
  • Research Personnel / psychology*
  • Risk Assessment