Patient and Public Involvement: Supporting a future of better research Isabelle Abbey-Vital, Research Involvement Officer

Where patients, carers and/or members of the public are actively involved in research projects and in research organizations. Involvement Where information and knowledge about research is provided and disseminated Engagement Taking part in a research study (what used to be called a ‘subject’) Participation

In the UK Evidence of PPI is a compulsory requirement for National Institute of Health Research (NIHR) funding streams It is increasingly being recognized as important by other major funders, including the Wellcome Trust and Cancer Research UK The National Research Ethics Service will ask researchers about their plans for involvement

The impact of involvement Research collated by NIHR has suggested that PPI, done well, can: Improve the quality and relevance of research Offer a unique insight and perspective from people with personal knowledge and lived experience of a condition/service/treatment Ensure accountability for public or charity funding Empower patients and carers, providing a route to influencing change and improvement in issues which concern people most

The challenges Working with contributors who have physical or cognitive disabilities Communicating in plain English to involvement contributors Managing expectations of the purpose of PPI Time constraints Lack of support or budget for involvement at host institution Sustaining meaningful involvement at every stage of the research process

Parkinson’s UK PPI strategy

Our PPI programme Over the past year, we have: Provided hands-on advice and financial support to facilitate involvement in 8 research projects Trained 50 people affected by Parkinson’s across the UK to understand how they can help shape research Developed PPI resource and training for researchers

Our evidence From the PPI we have supported it was concluded: People affected by Parkinson’s are able to draw on their experience of day-to- day life with Parkinson’s to provide a ‘reality check’ for researchers PPI input enriched the research and identified problems that would potentially have arisen once the project was underway Researchers found the experience motivating, and agreed they would definitely involve people affected by Parkinson’s in their research again

The resource for researchers How-to guide to involvement to answer: What is Patient and Public Involvement? How do I involve at every stage of the research process? What is the difference between consultation and collaboration? At what stages in basic and clinical research can I involve? Are there any examples in Parkinson’s research? How can PUK support me to do this?

Tracking Parkinson’s The lead investigator met with a group of people affected by Parkinson’s in a focus group, for their input on the planning for the next phase. This resulted in: Increased participant engagement Increased study questionnaire choice for participants Active linkage of participants to opportunities for new research studies and clinical trials

Involvement in basic research In the context of lab-based research, involvement can: Motivate researchers who may have no direct contact with patients Facilitate with the review of plain English summaries for funding and ethical approval applications Help researchers to communicate how their project could potentially lead to patient benefit in the future Help researchers to communicate the results of their research

Future recommendations More emphasis on patient involvement in funding calls for research proposals Increased availability of guidelines and training on patient involvement from the EU to researchers applying for grants Improved support for patient organizations to facilitate involvement

Thank you Isabelle Abbey-Vital E: T: