Community involvement as research partners is not new, but applying similar approaches to involving patient communities in biomedical research has only recently gained widespread attention. The Patient-Centered Outcomes Research Institute (PCORI) is working hard to integrate the patient perspective into areas of clinical research that previously weren’t very open to patient inclusion. No matter how much we as researchers know about a disease, we usually don’t know what it feels like to have the disease or experience the treatment. Successful patient engagement in research is the only way to bring this expertise into research projects.
Patient engagement is an important step towards ensuring research focuses on what matters most to patients and advancing research agendas that actually improve patient outcomes. As a researcher that has seen the value of patient engagement, I am committed to shifting the culture of research to be more inclusive and meaningfully engage patients and other stakeholders in all projects and at all stages of the research process.
PCORI supports patient communities leading research projects, and driving research agendas.
Patients are ready to be partners in research, and their input makes our research better. Here’s a quick example of how they improve research: In a research study focused on obesity, patient partners told the researchers to take blood pressure readings before you weigh the participants. Many patients have anxiety and fear around being weighed that will cause their blood pressure to increase. It’s a small detail that was overlooked by all the scientific partners of the research team. It took a patient partner to identify this small change that improved the quality of data collected and validity of study results.
Engagement in research is about sharing power and ensuring that the perspectives of the patients, caregivers, and communities affected by a disease have an equal seat (or two) at the table. Their participation adds value to everything we do and will lead to better research results.
PCORI is actively supporting researchers who are flipping the research model. Instead of needing to justify including patients as part of the study team, PCORI requires explanation when they aren’t included. PCORI supports patient communities leading research projects, and driving research agendas. They are working to promote authentic collaboration and multi-stakeholder teams. I am confident that this will yield more useful results that the healthcare community can quickly incorporate into practice and guide patient and provider decision making.
Rebekah Angove, PhD, is the Associate Director of Health Services Research at the Louisiana Public Health Institute (LPHI) and an adjunct Assistant Professor at Tulane University. Angove is also the director of stakeholder engagement for REACHnet, a PCORI-funded partnership between LPHI and five partner organizations. She is also the Project Lead on a PCORI-funded Engagement award, which is designing training programs to increase skills and build capacity of medical students to engage with patients during their future careers as physicians and clinician researchers.