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June NUI Galway Announce Three Community-Academic Partnerships to Improve Patient Healthcare
NUI Galway Announce Three Community-Academic Partnerships to Improve Patient Healthcare
Community partners and NUI Galway researchers working together to improve the health of people living with chronic fatigue syndrome, aphasia and cardiac rehabilitation
A new education and training initiative, the Community Engaged Scholars Programme (CES-P), is taking place at NUI Galway. The aim of the CES-P is to support the development of partnerships between researchers and community organisations interested in conducting research together that aims to improve the health of their community and that is driven by public and patient involvement (PPI) principles. Best summarised by the slogan Nothing about us, without us, PPI means that the voice of the public or patient guides and influences all stages of research, and that those likely to benefit from new treatments or services arising from research are involved in the decision-making that leads to their development.
The CES-P was developed initially at the Medical University of South Carolina, international partners of the PPI Ignite @ NUI Galway programme. The programme is successfully delivered across a number of universities in the US and in Africa. Following a competitive selection process, three community-academic partnerships were recently chosen by a panel of academics, with input from public reviewers, to be part of the first roll-out of the CES-P in Ireland.
The three partnerships will complete an intensive training programme over the coming months, a mixture of face-to-face workshops and online learning. Each partnership will then co-design and co-produce research addressing an agreed research question that is of interest to both the community and the researchers. The partners will then work together to share the research results with the public, as well as with researchers, health care professionals and policy makers. In the longer term, the partners will work together to apply for further research funding and to continue to work together to improve the health of the relevant community.
The three successful partnerships represent very different communities and divergent academic backgrounds and there is great breadth in the health conditions of interest. One group is focused on Chronic Fatigue Syndome (CFS), with the Irish CFS Association represented by Orla NíChomhraí and Tom Kindlon, partnering with Dr John Cullinan, a health economist at
NUI Galway who is already working with EU colleagues in the area of CFS. This partnership is interested in gathering data related to the impact and burden of CFS for Irish people living with the condition.
Dr John Cullinan says: “For far too long the voices and experiences of Irish CFS patients have been missing from research and policy”,while Orla NíChomhraí adds:“This collaboration is an attempt to put the patient perspective front and centre in developing evidence that helps improve the lives of those living with ME.”
Dr Ruth McMenamin, a lecturer in speech and language therapy at NUI Galway has many years’ experience of collaborating with people with aphasia (aphasia is an acquired language disorder experienced by up to one-third of the stroke population) in teaching, research and practice. The Irish Heart and Stroke Foundation, represented by Martina Greene and the Ballinasloe Stroke Support group are partnering with Ruth on the CES-P programme and together with people with aphasia they will co-design and co-implement research to raise awareness of aphasia.
Ruth McMenamin and Martina Greene point out that: “People living with aphasia are one of the most marginalised groups in our communities. Our goal is to work with people living with stroke and aphasia to promote inclusion through a targeted national aphasia awareness campaign. We want to make Ireland an ‘aphasia friendly’ country.”
The third successful partnership sees Croí, represented by Irene Gibson and Denise Dunne, partnering with a group of health psychologists, led by Dr Oonagh Meade from NUI Galway. This partnership is interested in exploring the potential of delivering cardiac rehabilitation programmes electronically (via web sites, videos etc.) rather than the traditional face-to-face rehabilitation programmes.
Irene Gibson from Croí, says: “We are delighted to be part of this innovative program which will give the public and those affected by cardiovascular disease the opportunity to have their voice heard and be actively engaged in driving areas of research that are vital to them. As a heart and stoke charity our work is driven by the needs of the communities we serve and therefore being part of this initiative is a perfect fit. We believe that by adopting this participatory approach to research there is a real potential to influence policy and change how we deliver prevention in Ireland for the better.”
For more information about the PPI Ignite @ NUI Galway programme, visit: https://www.nuigalway.ie/ppi/