Professor Mary McCarron from Trinity college Dublin spoke about how people with intellectual disability were not just part of the Irish national longitudinal study on ageing but also influenced the design and conduct of the study, were involved throughout the research study, and helped to communicate the findings of the study in an accessible manner.
Carole Bennett is the chairperson of the PRIMER group in Manchester. PRIMER is a group of patients, carers and members of the public who work closely with researchers in primary care at Manchester University, drawing on their life experiences to bring the voice and perspective of the public/patient into the planning and conduct of research.
Prof Seán Dinneen and Ciara Keighron are helping to redesign diabetes care for young people. Prof Dinneen and his team are looking into if a problem lies with the way we deliver diabetes care to young adults. They are involving young people in designing how diabetes care should be made available to their age group.
Carmel Geoghegan, a dementia advocate told her story of how she got invloved in PPI. After her mother got diagnosed with dementia, Carmel completed a Diploma in Social Gerontology. She has since been involved in numerous research projects, both as a participant and partner. Carmel spoke of the knowledge she gained from PPI.
Judith Sibley, the mother of a child with a rare cancer “neuroblastoma”, tells us about Navigating clinical trials as a parent of a child with a rare disease. Judith attended neuroblastoma conferences and at these conferences she heard about potential clinical trials available for her daughter. Her daughter took part in a clinical trial in America.
Dr. Cody from the HRB, reported on a survey conducted by the HRB on “How would you support public and patient involvement?”. The survey had two streams, one aimed at researchers and the other aimed at members of the public and patients. Watch the video to see Anne discuss the background of the survey, the results and outcomes of the survey and how the HRB are going to react to the outcomes.
Dr. Ruth McMenamin was involved in a participatory health research study that included people with aphasia as co-researchers in the development of evaluation criteria for a Conversation Partner Programme. She was joined by Michael Griffin, a man with aphasia. Micheal spoke of the empowerment he experienced working as a co-researcher on a study on people with aphasia.
Sarah Simkin from Jigsaw Galway, gave a presentation about lessons learnt from public participation in a community mental health service. Jigsaw have a youth advisory panel (YAP) who are very involved in the service. The YAP are also involved in research projects. Sarah highlighted the value of public and patient involvement in research within the mental health service.
Dr.Derick Mitchell the chief executive of the Irish Platform for Patient Organisations, Science and Industry, informed us about what IPPOSI do and the inclusion of patients in this. IPPOSI are participating in the European initiative EUPATI, which is involved in patient education on medicines R&D. Joan Jordan a EUPATI trainee also spoke of her involvement in the education initiative.