Health Research Board expands the opportunity for the public, patients and carers to be involved in health research

The Health Research Board (HRB) is announcing €5m* in funding to support research institutions develop a network to advance the involvement of the public, patients and carers in health and social care research, from generation of ideas to delivery of results.

The initiative, in collaboration with the Irish Research Council (IRC), will see the development of a national network of Public and Patient Involvement (PPI) centres across 17 higher education institutions** on an all-island basis.

The new Network grows and consolidates the work of its predecessor, PPI Ignite. The first of its kind in Ireland, this initiative saw the HRB and the IRC support five universities to catalyse change in Irish research culture by providing support for researchers to involve people in every stage of their research.

Commenting on the announcement, Dr Mairead O’Driscoll, CEO of the HRB said:

“Involving people in the work we do and the work we fund leads to improved research, improved outcomes and improved lives. People’s insights and life experience can inform that work in ways researchers operating in isolation can’t.”

This new PPI Ignite Network is the next step in the HRBs national leadership of involving people in research. Working with the Irish Research Council and all the partner institutions, we are helping to ensure that people and patients are involved at every stage of Irish health and social care research, right from the start, before pen is even put to paper for a research proposal.”

IRC Director Peter Brown also welcomed the award, saying:

“The exchange of knowledge and innovation is a key action in the IRC’s strategy, so I am delighted to further support this award announced today. This programme seeks to embed a culture of public and patient engagement in research across our higher education institutions and promotes richer, more meaningful research outcomes. Following recent joint initiatives such as the COVID-19 Rapid response call, the IRC are pleased to again be partnering with the HRB in support of research for societal benefit.”

NUI Galway is hosting the PPI Ignite Network Programme Office. Leading the team is Professor Sean Dineen, who said:

“We are excited to be given this opportunity to showcase what Ireland can deliver in terms of high quality, meaningful public and patient involvement in health and social care research. We look forward to working with our partner organisations to realise the potential of this investment.”

PPI is research undertaken ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them, improving research quality and ensuring it’s relevant, useable, and in the best interests of the patient and general population. The new PPI Ignite Network will:

• Develop and deliver PPI education and training to undergraduate and postgraduate students, researchers, the public, patients, and community organisations, policymakers, and research funders
• Explore ways of making it easier to involve patients and the public in research, how to identify what is good PPI and how to measure the impact of PPI
• Ensure the voices of marginalized and disadvantaged groups are heard
• Establish an online PPI hub, annual PPI Festival and other events to share examples of good PPI, provide useful PPI resources and share knowledge and experience. The online hub will also connect patients and members of the public interested in being involved with researchers seeking PPI partners.

Wendy Costello is a patient advocate and PPI contributor, working with research groups in NUI Galway, University College Dublin and the National Children’s Research Centre. She says:

“As a patient advocate, I’m so excited to see the development of the PPI Ignite Network. This joined-up thinking will see a collaboration of the best minds in Ireland coming together to change the landscape of PPI here, and make it the envy of Europe. I can’t contain my excitement and want to roll my sleeves up and get stuck in! I’m particularly excited about the development of a PPI hub. This is something we’ve been pushing for. Matching researchers with the right people is crucial to research priorities and outcomes.”

The new network comprises the five original PPI Ignite universities, and two new universities working with 10 national partner organisations as follows:

** Lead sites:

• NUI Galway (hosting the PPI Ignite Network Programme Office)
• University of Limerick
• Trinity College Dublin
• University College Dublin
• Dublin City University
• University College Cork (new lead site)
• RCSI University of Medicine and Health Sciences (new lead site)

National partners:

• Queens University Belfast
• NUI Maynooth
• Tusla
• HSE Research & Development
• Health Research Charities Ireland
• Campus Engage
• IPPOSI
• HRB Trials Methodology Research Network
• SPHeRE
• International Collaboration for Participatory Research

A total of 54 local partners are also involved, including charities and community development groups, international and national academic collaborators, advocacy groups, Saolta and Ireland East Healthcare Groups, HSE Digital Transformation, Clinical Research Facilities, Dundalk IT and SFI Centres.

*The HRB will fund €2.3 million for the PPI Ignite Network. An additional €1 million and €1.6 million co-funding will come from the Irish Research Council (IRC) and the network’s lead sites respectively, leading to a total budget of exactly €4.9 million over five years.