March 21, 2017

Family Voices Receives New PCORI Engagement Award for Family Wisdom Project


Family Voices is pleased to announce the receipt of a new award from the Patient-Centered Outcomes Research Institute (PCORI) to establish a national learning collaborative supporting expanded capacity for research partnerships among family organizations and underserved communities. Fourteen Family-to-Family organizations (F2F) and Family Voices state-affiliate organizations (SAO) will each work with a vulnerable or underserved priority community in their state to develop meaningful PCOR partnerships, while providing support for each other and learning best practices through bi-weekly videoconferences. Stories, resources, and evaluations resulting from the project will be disseminated to F2Fs, SAOs, and other family-led and professional organizations and individuals nationwide. Our long-term goal is to establish a sustainable capacity for patient-centered outcomes research (PCOR) within the F2F/SAO network. Family Voices is partnering with the University of Nevada at Reno in this initiative.

Project activities will include:

  • A survey to assess the assets and needs of the F2Fs and SAOs for partnering in patient-engaged research.
  • A learning collaborative, led by Family Voices and FV SAOs Idaho Parents Unlimited, and Washington PAVE, designed to increase the quality and visibility of PCOR partnerships within the F2F/SAO network.
  • Outreach to professionals and professional organizations to promote the value of F2Fs and SAOs as research partners and to recruit researchers for partnerships.
  • Documenting and disseminating stories and best practices about authentic research partnerships from our F2F/SAOs to family and professional individuals and organizations nationwide.

The two year project begins on April 1, 2017.