Stakeholders’ Views on Data Sharing in Multicenter Studies

By The ArthritisPower TeamNovember 2, 2021December 9th, 2021Research Registry

The aim of this study was to understand stakeholders’ views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods. 11 semi-structured interviews were held with patients, researchers, Institutional Review Board staff, multicenter research governance experts, and healthcare system leaders within 5 US Stakeholder groups. Stakeholders were open to data sharing in multicenter studies that offer value and minimize security risks. Cost and security risks were the primary influences against data sharing.

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PatientSpot registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). PatientSpot (formerly known as Arthritis Power) was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB). We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page. Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), Arthritis Power (now PatientSpot)’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. Global Healthy Living Foundation (GHLF), the parent organization of PatientSpot, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners.