224 Parkinson’s UK – connecting the Parkinson’s research community and increase participation

Abstract

Before Parkinson’s UK went through its rebrand in 2010, we asked our members how we were perceived. The results highlighted the need for us to communicate, collaborate and involve people affected by Parkinson’s in more areas of our work. Today everything we do as an organisation includes people affected by Parkinson’s.Within the research directorate we have focused on 3 key initiatives over the last decade; the Research Support Network (RSN), Research Involvement and Participation. The Parkinson’s UK RSN is an online network of currently over 6000+ people affected by Parkinson’s who are interested in research.We surveyed our RSN membership and 70% of them wanted to take part in research but only 24% had. Many Parkinson’s research trials have failed to recruit participants to time and target, causing the research to go over budget and sometimes fail to reach significance. Data from the 2018 Parkinson’s audit report found only 20% of people affected by Parkinson’s are told about research by their health care profes- sional. By working with people affected by Parkinson’s, Health Care Professionals and Researchers, we developed the Participation work stream to address this discrepancy. The tools we’ve created help researchers to connect with potential participants, patients to take control and health care professionals to signpost people to find research in their area using our Take Part Hub, improving outcomes for patients and research performance.ahursey@parkinsons.org.uk