Background: Patients and families from vulnerable and underserved communities encounter significant barriers to participating in patient-centered outcomes research (PCOR) in meaningful ways. Fourteen community-based, family-to-family (F2F) organizations nationwide will select a vulnerable or underserved priority community in the state that they serve. These 14 F2Fs will develop meaningful PCOR partnerships with their priority communities, 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 and other family-led and professional organizations and individuals nationwide.
Objectives: The project’s long-term aim is to establish a sustainable capacity for PCOR within the F2F network, and document and disseminate best practices that will spread the ideas and strategies generated by the project. The aims for this proposed project include:
- Assess the current state of research partnerships and capacity to engage in PCOR within the F2F network
- Develop and implement a videoconference-based telementoring program to promote PCOR partnerships with F2F organizations
- Conduct outreach to pediatric researchers to promote awareness of the F2F organizations as a valuable patient-engagement resource for PCOR
- Document and disseminate stories and best practices from the project’s F2F partners
Activities: For Aim #1, the project team will conduct a survey to assess the readiness of the F2F organizations to partner in patient-engaged research and identify needs and assets in promoting these partnerships. For Aim #2, researchers will promote patient-engaged research partnerships in the F2F network. The central activity will be a learning collaborative designed to increase the quality and visibility of PCOR partnerships that are currently underway or beginning, and identify successful engagement strategies. Two F2F organizations that have partnered in previous phases of the Family Wisdom project will provide examples to illustrate PCOR. For Aim #3, through existing partnerships with professional organizations, and new relationships to be established with research-oriented pediatric organizations, the project team will promote the F2F network as prospective research partners. For Aim #4, researchers will develop webinars, printed and online materials, and vignettes to share stories and best practices.
Partnerships and Engagement: The majority of staff in the core Family Wisdom team, and in the F2F network, are themselves “patient partners”—family caregivers of children with special healthcare needs. Family caregivers from vulnerable and underserved communities will partner in the core team, the oversight and evaluation committees, and in training and engagement activities of the F2F organizations. The Family Wisdom project is a collaboration of Family Voices, a national family-led organization that provides the technical assistance to the F2F network, with the University of Nevada, Reno, and the family-led Partners for Action Voices for Empowerment (Washington state F2F), and the family-led Idaho Parents Unlimited (Idaho F2F).