Project Rationale

Since 1992, IPFCC has provided education and training to organizations to build their understanding of patient- and family-centered care, define what partnerships with patients and families in health care transformation look like, and share knowledge of specific, effective strategies for creating and sustaining partnerships. While initial partnership efforts spanned care experience, quality, safety, and health professional education efforts, it became apparent that researchers were also becoming interested in collaborating with patients and families. This motivation was greatly enhanced by funders, such as PCORI, who require that researchers engage patients and families in their projects as collaborators and not solely as study participants. Many researchers have struggled to effectively involve patients and family members in meaningful ways as essential members of research teams; and many patients and families find research partnerships to be challenging. They report they are invited at a later stage of a project where they can’t make a significant impact or are not given appropriate training to participate effectively.

IPFCC focused this project on exploring the role of Patient and Family Advisory Councils (PFACs) in research, knowing that PFACs provide a unique and viable mechanism for building and sustaining partnerships in research initiatives for several reasons. PFAC members:

• Have experience with the health care system;
• Have demonstrated their interest in changing/improving health care for others;
• Are familiar with a structure and process for collaboration;
• Bring an understanding of the health care system and its realities; and
• Have experience in partnering with clinicians and staff to effect sustainable change.

We broadened the content of the Toolbox to include strategies for engaging patient and family advisors and not just PFACs as we found that many organizations were interested in how best to engage PFAs as well as PFACs.