In the last decade there has been much growth in the involvement of patient and family advisors in improvement and research. IPFCC recognizes that many organizations struggle to build advisory programs that reflect the diversity of the population they serve. In order to see improved health equity and reduced health disparities, we must strengthen the capacity to create partnerships with individuals and families living in diverse and underserved communities; better involve them in their own care; and engage them in the improvement of care processes, interprofessional education, and research.
To address this problem, IPFCC will plan and convene the 8th International Conference on Patient- and Family-Centered Care: Promoting Health Equity and Reducing Disparities and the development of a featured track presenting exemplary partnerships with patients and families from diverse and underserved communities in PCOR and CER.
A key output will be a Knowledge to Action Report—Strengthening Diversity in Research Partnerships and a set of related resources to provide guidance and best practices for supporting increased diversity among the patients and families who participate in research. IPFCC will conduct a literature search, interviews with experts, and site visits to exemplary programs that partner with patients and families from diverse and underserved communities in PCOR and CER. The innovative programs featured at the conference and these other major project activities will inform the Report and resources.
IPFCC will establish an Expert Advisory Panel that will include national experts in health disparities research, PCOR and CER, and patient and family partners who have experience as members of research teams. Serving on this panel will be representatives from the Center for Community Health and Vitality – a part of the Urban Health Initiative at the University of Chicago Medicine, Smart from the Start in Boston, the UNC School of Medicine, the Center for Health Equity Research, the Florida Health Equity Research Institute, and others who will share their expertise and assist in Conference planning and developing and disseminating the Knowledge to Action Report and related resources.
Project objectives include: 1) convene the International Conference; 2) identify best practices for engaging patients and families from diverse and underserved communities as members of teams conducting PCOR and CER; 3) develop and disseminate a Knowledge to Action Report—Strengthening Diversity in Research Partnerships and a set of related resources to guide others in developing authentic and effective research partnerships with patients and families from diverse and underserved communities; and 4) create broad public awareness for these partnerships in research.
At the end of the two-year project, outcomes will include an increased interest and commitment from the general research community, health care professionals, patient and family advisors, and communities to broaden the diversity of patients and families engaged as research partners; increased capacity of researchers leading research efforts to effectively recruit and prepare patients and families from diverse and underserved communities to engage in PCOR and CER; and a cadre of patient and family advisors from diverse and underserved communities who are skilled at partnering in research efforts and can serve as mentors to other patients and families.