Proceedings of The Physiological Society

Physiology 2016 (Dublin, Ireland) (2016) Proc Physiol Soc 37, PCA111

Poster Communications

Engaging and involving the public in shaping the future of research into cerebral palsy

D. I. Lewis1,2, S. Chakrabarty1, R. J. O'Connor3, N. M. Almond3

1. School of Biomedical Sciences, University of Leeds, Leeds, United Kingdom. 2. Biosciences Education Research Group (ULBERG), University of Leeds, Leeds, United Kingdom. 3. Institute of Rheumatic and Skeletal Medicine, University of Leeds, Leeds, United Kingdom.


Research into the causes and consequences of cerebral palsy, is often ‘to', ‘about' or ‘for' people with cerebral palsy i.e. what researchers or clinicians think they want rather than research that is "with" them, their families or carers - research that is relevant, focused and directly addresses their needs. Patient-Public Involvement (PPI) groups, where patients and the public decide clinical care priorities or identify and prioritise strategic research areas are increasingly being used by both Government and clinical or translational research funders to direct research and funding priorities. However their use within the biomedical sciences is extremely limited. Therefore, our aim was to use PPI methodologies to identify and prioritise the research questions for CPRes (Cerebral palsy research), a newly created, multi-disciplinary research grouping at the University of Leeds interested in increasing understanding of the causes and consequences of cerebral palsy, and in developing new, or enhancing existing, supportive therapies and treatments for people with the condition. People with cerebral palsy, their families and carers are at heart of our research strategy; equal partners with researchers, clinicians and other healthcare professionals in our research community. To identify the initial research questions for the group, a workshop, attended by people with cerebral palsy, their family and carers, clinicians, healthcare professionals and researchers, was held. Delegates split into small groups, each led by a person with cerebral palsy, to discuss, amongst themselves, the area(s) where they thought research funds and effort should be focused. The outcomes of their discussions were collated, shared with the community, and uploaded onto the groups website (Lewis et al, 2016). An active, international twitter community (@CPResLeeds) has been developed to facilitate community engagement and involvement with the research going forward. This project has shown that PPI methodologies are an effective and novel means of engaging and involving the public with research in the biomedical sciences, and in shaping translation research questions and priorities

Where applicable, experiments conform with Society ethical requirements