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Patient involvement and engagement in research can benefit patients, not just research.

Research involvement can build confidence and community and restore a sense of purpose and agency.

Patient involvement must be meaningful, voluntary, and supported.

Emma Collins, Patient and Public Involvement Manager, Encephalitis International

Much that is written about patient and public involvement and engagement (PPIE) focuses on how the involvement of patients and their caregivers improves research. Lesser attention is given to the equally important question: What does participating in research do for the patient?

Through the words of those affected by neurological illness and brain injury who have since engaged with research, this post will challenge the assumption that PPIE is carried out only to benefit research and researchers. Rather, it will show that PPIE can become an aspect of a person’s recovery and reintegration into society following a brain injury.

When I realized that speaking was triggering partial paralysis/seizures to my face, I avoided speaking… After each episode, I could feel my cognitive abilities, vision and motor skills failing. As I remained silent, I made a promise to myself. If and when I speak again, I will advocate for research and use my voice for good—to help others learn more about this condition. That's my motivation, my promise to myself when I didn't speak. –A woman affected by LGI1 encephalitis in Canada

When I realized that speaking was triggering partial paralysis/seizures to my face, I avoided speaking… After each episode, I could feel my cognitive abilities, vision and motor skills failing. As I remained silent, I made a promise to myself. If and when I speak again, I will advocate for research and use my voice for good—to help others learn more about this condition. That's my motivation, my promise to myself when I didn't speak. –A woman affected by LGI1 encephalitis in Canada

Research involvement activities do not just contribute to medical knowledge; although PPIE will not provide a cure or be able to give answers that the patient or their family members may have, it can help people to rebuild an understanding of themselves and their "new normal."

PPIE can provide a way........

© Psychology Today