The funding from PCORI supported key strategies for this project: the outreach IPFCC provided to Patient and Family Advisory Councils (PFACs), researchers, and health care professionals at seven organizations, featured programming at IPFCC’s 7th International Conference on Patient- and Family-Centered Care: Partnerships for Care, Interprofessional Education, and Research, held in New York City in July 2016, and the development and dissemination of this Toolbox.
Project activities included the following:
- Recruited and selected seven organizations that were diverse in geography, setting, and population they serve.
- Interested organizations were asked to complete a survey to determine the effectiveness of their PFAC, their access to researchers, and the willingness of at least one researcher to partner with the PFAC.
- Prepared members of patient and family advisory councils (PFACs) and researchers from seven organizations to partner effectively in research efforts and to ultimately serve as exemplars to the field.
- Site visits were conducted to meet the team, understand their priorities for this project, and provide initial training to PFACs, researchers, and staff.
- Created programming within IPFCC’s 7th International Conference to showcase exemplary partnerships in research.
- Eighteen oral sessions and seven posters were presented on research partnerships.
- The seven project sites presented three sessions and one poster, participated in an open networking breakfast, and participated in a working meeting with IPFCC project staff to begin planning this Toolbox.
- Interviewed representatives from ten organizations across the U.S. and Canada with experience in collaborating with patients and families in research. They provided their expertise, materials, and tools.
- Developed and disseminated this Toolbox offering strategies, tools, and lessons learned to guide others in creating and sustaining partnerships with patients and families in research.