An tOllamh Ciarán Ó hÓgartaigh, NUI Galway President opened the Fourth National Public and Patient Involvement in Research Conference: ‘Progressing Together’. Professor Andrew Murphy chaired the first session of the day.
Derek Stewart, OBE, is the director for Patient Involvement and Engagement with Research& Innovation at Nottingham University NHS Hospitals Trust. He spoke about sustaining public and patient involvement in research and getting the balance right.
Dr Helen Rochford Brennan, advocate and person living with dementia spoke about her journey in community activism, PPI and national and international research. Helen is an active PPI contributor who believes PPI should be a fundamental part of research and done using a human rights based approach.
Lanie Bruce, Mairéad Fennessy and Barbara Riddell spoke about the HSE Patient Narrative Project ‘Your Voice Matters‘. This project centrally involved the voice of the patients and service users in the design and delivery of integrated care. Lanie also discussed the Wexford COPD peer support group and her role as chair.
Ciara Duffy and Cameron Keighron are both members of the D1 Now Young Adult Panel. The D1 Now Project aims to develop and pilot a complex intervention to improve health outcomes among young adults with Type 1 diabetes in Ireland. Ciara and Cameron spoke with Dr Bláthín Casey the D1 Now programme manager about their five year PPI journey with the Young Adult Panel.
Professor Carolyn Jenkins, Medical University of South Carolina, spoke about the Community Engaged Scholars Programme in MUSC. Carolyn leads the Community Engaged Scholars Programme (CES-P), an initiative now in its 9th year that builds community and academic partnerships to co-design and co-conduct research to improve health in local communities. Carolyn is working with PPI Ignite @ NUI Galway to pilot the CES-P in Ireland.
Professor Sean Dinneen is the lead of the PPI Ignite @ NUI Galway programme. Prof Dinneen gave the closing comments at the Fourth Annual PPI in Research Conference hosted by the HRB Primary Care Clinical Trials Network and PPI Ignite @ NUI Galway.
Paul Ryan from the Irish Neonatal Health Alliance spoke about his path to PPI at the conference. Paul gave an excellent description on the reality of life with a premature baby and the importance of being a voice for patients who can’t speak for themselves. Paul is currently involved in the HRB funded CRDI NEPTuNE research programme.
In this session, researchers and a PPI contributor outlined the involvement approaches and methodologies in their research. A panel of experienced PPI researchers and a PPI contributor facilitated an interactive conversation on each presentation, giving feedback on the approaches outlined and exploring PPI methodological issues, with contributions from the audience. Dr Nikita Burke, chaired this session.
Sharon Conway spoke about the Irish Pilot of the Community Engaged Scholars Programme (CES-P) at the PPI in Research Conference. Sharon is the Programme Coordinator for the CES-P at PPI Ignite @ NUI Galway. There are currently three partnerships completing the Community Engaged Scholars Programme with PPI Ignite @ NUI Galway.
Running in parallel with the Lightning Talks, different sessions facilitated a thoughtful discussion of GDPR in the context of health research, a hands-on exploration of the sometimes blurred boundaries between PPI and qualitative research, and a focus on PPI in grant applications
