Kevin Haynes, PharmD, MSCE
PCORnet: Health Plan Research Network Data Linkage and Patient Engagement with Patient-Powered Research Networks
Data linkages; PCORnet; Patient-powered research networks; Health plan research networks; Computable phenotypes
- One of the biggest challenges facing healthcare today is reducing gaps in evidence necessary to improve health outcomes. Research collaborations between health plans and patient-powered research networks (PPRNs) can help close this gap.
- PCORnet enables linkages with patient groups through PPRNs, which include participating organizations and leadership teams of patients, advocacy groups, clinicians, academic centers, and practice-based research networks.
- From the health plan perspective, postal mail outreach to members was more effective than email outreach around engaging patients in research opportunities.
When engaging with different patient-powered research networks, are there differences around common conditions compared with rare or stigmatized conditions?
What are participants told about the commercialization of findings, whether in terms of new treatments that might be identified, or the ways in which findings might affect health plans’ willingness to continue to cover certain treatments?
An essential aspect of collaboration is building and maintaining the trust of members in the research networks.
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