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 Partner Spotlights
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.