At PCORI, we notice when organizations put patients and their caregivers front and center in health care. One such way organizations are doing this is by establishing patient and family advisory councils. These councils work to improve delivery of health care. They think of healthcare professionals working with patients and their caregivers, not for them.
But until now, only select councils have partnered with researchers on comparative clinical effectiveness research (CER). PCORI-funded projects are enriching and broadening this important work to ensure that research aligns with what matters most to patients and families. We highlight one of these awards here in the lead-up to a conference this week for patient and family advisors.
A PCORI Partnership
PCORI funded a Eugene Washington PCORI Engagement Award led by the Institute for Patient- and Family-Centered Care (IPFCC), a nonprofit founded in 1992, which pioneered the development of these councils. IPFCC saw research as the next natural frontier for councils. With the award, IPFCC wanted to learn how to best involve councils in research.
IPFCC surveyed healthcare systems about experiences in research partnerships. Many researchers said they struggled to effectively involve patients and family members in meaningful ways. Similarly, patients and families noted they often had joined a project too late to make a significant impact, or they didn’t receive training to participate effectively. They also were wary of being used as rubber stamps for researchers’ project plans or findings.
As part of the project, IPFCC connected each of seven councils across the country with a researcher to form partnerships that would serve as case studies for how to engage councils in research.
“We learned very quickly that researchers are sometimes operating in their own silos,” says Marie Abraham, MA, IPFCC’s Vice President for Programming and Publications, and the leader of the PCORI-funded project. “And the patient and family advisory councils are based in a hospital or clinic setting, so they and the researchers don’t know about each other or have access to each other.”
With that feedback in mind, the team decided that training should be a key component of a blueprint for successful partnerships. For the councils, training focused on identifying the benefits of participating in research; recognizing the roles of advisors and councils across the stages of research; and enhancing confidence, skills, and knowledge about research and research partnerships. For the researchers and their staff, training focused on understanding collaborative research, identifying the benefits of and opportunities for patient and family engagement in research, and determining how to engage advisors and councils.
Donna Drouin, who became a healthcare advocate after a poor experience her mother had in the hospital, has been on a council for more than six years. Her council partnered with a researcher in the PCORI-funded project.
“Education is number one, and that was my big ‘aha moment,’” Drouin says. “You need to level the playing field. If you can get people comfortable with the concepts and with the nomenclature, then you’ve got them.”
Drouin stresses that councils must establish how much time they can devote to research, to determine the best use of their time. “Then you need to ask the researcher when they’ll have results, how they’ll be disseminated, and how the councils can help with that,” she says.
Lessons and Next Steps
These trainings and feedback from participants helped IPFCC develop guidelines on best practices for researchers and councils forming partnerships. Both researchers and councils said having open discussions was the most important step in the collaborative process.
“One thing I always hear from researchers is what a difference PCORI has made,” Abraham says. “Lots of researchers have wanted to use a collaborative approach, but they’ve been underfunded. Every one of them says PCORI has cracked that door wide open, and now other funders are catching up.” She’s seen more funders requiring that their researchers engage patients and families as collaborators—not solely as study participants—and she attributes that to PCORI.
One thing I always hear from researchers is what a difference PCORI has made. Lots of researchers have wanted to use a collaborative approach, but they’ve been underfunded. Every one of them says PCORI has cracked that door wide open, and now other funders are catching up.
Because the project was so successful, and because involving these councils in research is still a new concept, IPFCC received a second Engagement Award to explore how researchers are engaging patient and family councils from underserved populations. Addressing disparities also is the theme for IPFCC’s mid-June conference. And, of course, addressing disparities is a top PCORI priority, too.
Finally, IPFCC is leading the engagement activities of a PCORI-funded research project based at Oregon Health and Science University. The study is comparing two types of palliative care planning to see which produces a plan that best aligns with patients’ priorities.
Opportunities to Get Involved
This project and others like it have developed tools to educate the healthcare community and promote council engagement in research. We also look forward to exploring how councils and other stakeholder groups can play a role in not only the research itself but the dissemination and implementation of PCORI-funded research findings. Funding opportunities for these types of projects are available through two PCORI streams, Engagement Award: Capacity Building and the new Engagement Award: Dissemination Initiative.