Stakeholders' views on data sharing in multicenter studies.

ABSTRACT:

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 p

SUBMITTER: Mazor KM 

PROVIDER: S-EPMC6022827 | biostudies-literature | 2017 Sep

REPOSITORIES: biostudies-literature