The Massachusetts legislature passed a Patient and Family Advisory Council (PFAC) mandate in 2008. Ours became the only state requiring all acute care and rehabilitation hospitals to have PFACs, and over 80 institutions statewide now have one or more PFACs that play a critical role in improving care quality. Many institutions are focusing on meaningful engagement of patients and families – primary stakeholders in the health care delivery system – in quality improvement. Investigators are increasingly looking to PFACs as pipelines for patients and families who can advise in the development and implementation of research projects. However, most PFACs do not yet have the knowledge or training to proactively engage in PCOR, and the researchers do not regularly approach PFACs despite the unique and qualified perspective they offer.
The goal is to improve the capacity of PFACs to engage meaningfully in patient-centered outcomes research being conducted in in the state.
HCFA will formally integrate content related to PCOR into its annual PFAC Conference, and form a Research Readiness Subcommittee within the statewide PFAC Advisory Council it currently facilitates. The subcommittee will promote ongoing engagement between PFACs and researchers through convening with PFACs and research teams; webinars to help PFACs understand their role in PCOR; and surveys to evaluate PFACs’ research priorities and capacity for participation in PCOR.
The projected outputs from this project are the incorporation of PCOR capacity building resources into our existing work with PFACs; creation of sustainable opportunities for stakeholders within the burgeoning PCOR community to collaborate; and creation of a system for disseminating information about and data collected from PCORI projects that engage PFAC members.
Project Resource: PFAC Engagement in PCOR 2016 Report
Project Resource: Conference Materials
Project Resource: PFAC Conference Report