Encephalitis International and PPI (Patient & Public Involvement)
What is PPI?
PPI stands for Patient and Public Involvement in research. It describes how patients and the public can participate in medical research.
It is important that, where possible, patients and the public have the opportunity to be involved in all stages of research.
PPI can include:
- sharing lived experience of encephalitis, as a person affected or a family member / carer;
- taking part in focus groups to help to shape research questions;
- reviewing research documents such as participant consent forms.
PPI is not only about participating in a study as a research participant, it is also about ensuring that researchers consider the voices of those that they are aiming to study.
Why is PPI important?
PPI is becoming an increasingly important element of research funding requirements, as funding bodies ask researchers to explain how they have involved patients and the public in their study design.
PPI is a vital opportunity for researchers and people affected to be able to share experience and knowledge, to ensure that the research is relevant and addresses topics that are important to patients and their families, as well as being ethical and accessible.
PPI therefore helps to ensure the quality of research studies, for example helping to develop clearer aims and hopefully better outcomes for those affected.
How is Encephalitis International engaged in PPI?
Encephalitis International has an increasingly strong engagement with PPI.
As PPI Manager, Emma Collins works with our CEO, Dr Ava Easton, and our Director of Services, Alina Ellerington, on PPI projects such as:
- being co-applicants on research funding applications;
- facilitating patient and caregiver focus groups with researchers;
- reaching out to our Research Panel and Team Encephalitis volunteers to find participants for research studies.
Encephalitis International also helps to disseminate (share) research findings with both the public and academic community, ensuring that the findings are accessible to all. As a patient organisation, a central role for us in PPI is to ensure that the voices of patients and those affected are heard and advocated for, to increase their involvement in research.
What do you enjoy most about your role?
“I most enjoy being able to connect researchers with patients and their families, to give patients the opportunity to share their experiences and feel listened to by the researchers.
I think it is great to see that PPI is being given more thought in research, as it means that people affected by encephalitis can draw on their lived experience to feel involved and included in research.
I also really enjoy being able to continue building on the excellent PPI work already carried out at the charity, to be able to reach even more of our community and further deepen our involvement in new and upcoming encephalitis research.”
Emma Collins, Patient and Public Involvement Manager