Patient and Public Involvement in Research
Involving patients, their family and carers in research
Research is a crucial part of our mission at Encephalitis International. We work alongside global experts to further understanding of encephalitis. People whose lives have been touched by encephalitis play a crucial role in this work in a number of ways, including testing new treatments, and sharing their experiences to guide researchers in their studies of encephalitis.
Please reach out to emmac@encephalitis.info if you would like to hear more about the ways in which we can support research projects.
We can help you with your research!
Click below to read our document which outlines the way in which Encephalitis International can support patient and public involvement in research, including the way that we can collaborate with you on your research project.
Integrating patient and public involvement during the COVID-19 pandemic
Watch this video to find out about our published PPI paper for the COVID-Clinical Neuroscience (COVID-CNS) study.
This important paper highlights the impact and importance of involving patients in research.
If you would like to hear more about how PPI can make an impact on your study, get in touch with our PPI Manager.
"The participants' experiences have been so touching to hear and I really appreciate them being so open about such difficult times. Thank you so much again for your support. I really could not have done this without you!"
Hayley Grantham, Trainee Clinical Psychologist, University of Southampton
"I just wanted to say how grateful for all that you've done to help promote the research. Encephalitis International has been a major help with recruitment. Thank you!”
Dr Mariann Kovaks, Trainee Clinical Psychologist, University of Oxford
"Thank you so much for your help with this. I am so impressed by how you work as an organisation and the willingness of people to support research."
Dr Kata Pauly-Takacs, Senior Lecturer in Cognitive Psychology and Neuropsychology
What is Patient and Public Involvement (PPI)?
PPI in research activities are a way to ensure that those affected by encephalitis, directly and indirectly are involved in every aspect of a research study. It is vital that patients, their family and carers are consulted throughout the research from the design stage of the research to the last stages of disseminating the research findings in the most accessible way.
Research outcomes and publications
Visit this page to learn about some of the outcomes for research that we have been involved in, including papers that members of the Encephalitis International team have co-authored on!
Are you a professional considering collaborating or consulting with patients on your research?
Learn more about why it is important to include patients and the public in your research.
If you are interested in finding out more about research, including the studies that we support, please register your interest in research by completing this form.
Do you have any questions?
Contact our Patient and Public Involvement in Research Manager, Emma Collins: emmac@encephalitis.info
Our PPI Research Manager work is currently supported by the Peter Sowerby Foundation