PCORI-funded research engages patients and caregivers in all aspects of the research process. Their involvement is essential to efforts to improve care transitions.
By engagement in research, PCORI refers to the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from selecting research topics to study, through designing and conducting studies and sharing results. We believe this makes research more patient-centered, useful, and trustworthy, ultimately leading to greater uptake by clinicians and the broader healthcare community.
“Patient partners” include patients who represent the population that is the focus of a particular study, as well as their family members, caregivers, and the organizations that represent them.
Incorporating the parent and family perspective when designing a research program gives it [the research] an authenticity and brings it closer to meeting the needs of the people it is trying to serve.
The PCORI-funded research teams in the Transitional Care Evidence to Action Network (TC-E2AN) involve patients and caregivers in their studies in various ways, including:
- Use of patient advisor groups during every phase of the research process
- Patient partners who serve as study co-investigators
- Patients who participate as peer mentors in research studies
Learn more about the projects in the TC-E2AN.
Patient Partners in Action
Led by PCORI staff from the TC-E2AN and Engagement, participants defined the stages of research as:
- Identifying patient partners
- Writing the project proposal
- Data collection and analysis
- Advocacy & policy development
The group reflected upon their roles and contributions, discussing what information is important to share with researchers during each research stage. Patient partners and TC-E2AN staff shared common themes represented on the journey map with researchers to begin a discussion on how patients can most effectively partner with researchers.
The TC-E2AN will use the results of this exercise to inform upcoming activities to support its project teams and enhance the involvement of patient and family partners.
Peter Thomas is a patient co-investigator in a PCORI-funded research study. He brings multiple perspectives to the research team as a trauma survivor, patient advocate, and attorney specializing in healthcare policy, including disability and rehabilitation. He serves as Chair of the Trauma Survivors Network Committee for the American Trauma Society.
I am a patient co-investigator for a PCORI-funded study that examines patient-centeredness in trauma care. Led by Douglas Zatzick, MD, at the University of Washington, the study aims to determine whether better care coordination and increased attention to patient concerns can improve outcomes of importance to patients, their caregivers, clinicians, and policy makers.
When I was 10, I was involved in a car accident and lost my legs below the knees. I also lost my brother in the same accident, so it was quite a traumatic experience. During my stay in the ICU, a man came to see me. In one smooth movement, he jumped out of the artificial legs he had been wearing and landed on the bed next to me. He showed me that my life was not over. That was a pivotal moment for me and led me to develop a passion for patient centeredness, and particularly peer support, in trauma care.
Patient co-investigators have the opportunity to make a real impact. We have actively participated in designing the research program, and helped make adjustments to enhance the study along the way. For example, midway through the research project, we suggested that what patients might really need is to talk with a peer—someone who has been through the same accident or injury. The principal investigator paid real attention to what we had to say, and together with the rest of the team, incorporated a peer support model into the study. The project headed in a direction it never would have gone had the patient perspective not been fully absorbed into the research design, and I believe this addition will enhance the impact of the program.
I see patient involvement in research spreading as more people are recognizing the value of incorporating the end-user perspective across all phases of studies. Researchers across the country are looking at results from PCORI-funded projects, and are adopting the concept of patient centeredness and patient involvement in their research voluntarily, even when it is not mandated. I believe this improves the quality of research.
There is a saying in disability policy circles—a moniker of civil rights for the disability community over the last few decades—"Nothing about us, without us". This saying is very applicable to the work that PCORI does. If you engage patients upfront and throughout the research process, you are bound to produce research that is more relevant to patients.