HRI Researcher to lead major project to involve public participation in health research

The Health Research Board and Irish Research Council have announced a new €1.75million initiative to help researchers involve the public at the very start of the health research process. It is the first of its kind in Ireland.

Professor of Primary Healthcare Research, Anne Mac Farlane is to receive a €350,000 PPI Ignite Award under this scheme. Based at the Health Research Institute and the Graduate Entry Medical School, Prof MacFarlane’s research will further integrate Public and Patient Involvement (PPI) into the Institute and the University, and allow us to support researchers across a range of disciplines to mainstream PPI in their research.

“This award is as a result of partnership working between representatives of the Limerick City Community Development Project, University Hospital Limerick Patient Liaison Group, HSE Community Care and Care Alliance Ireland who worked closely with UL to co-design our programme of work. We will now work together to organise training, networking and policy changes in our institutions to support meaningful involvement of members of the public in health research design.”

“We are delighted to also have support for our work from other external partners Multiple Sclerosis Ireland, Medical Research Charity Group, the Irish Platform for Patient Organisations, Science and Industry and the Health Research Board Trials Methodology Research Network, NUI Galway” explains Prof MacFarlane.

This programme of work will change the way research proposals are written by researchers by engaging with patients and the public at the design stage. While researchers may need patients or the public to be involved in the research, they rarely ask for their input. According to a recent HRB survey, this is not because researchers don’t want to, but because they don’t know how to go about it.  This funding scheme is designed to help Institutions create the right environment, training, support and processes to help researchers engage public and patients in their research from the start.

‘No one has more to gain from health research than patients who are already using health services, or the public who are all potential users.  It makes sense to involve the public and patients at the outset to ensure that their life experience informs the approach taken when designing a research proposal,’ explains Dr Máiread O Driscoll, Interim Chief Executive at the Health Research Board.

This award is in line with UL’s commitment to drawing on the rich tradition of Participatory Health Research to guide capacity building for PPI in health research. UL have been a leader in the field in promoting this approach to PPI in Ireland. Participatory Health Research is about the co-production of research through partnerships between all stakeholders affected by or responsible for action on the issues under study: members of the pubic, people working in the health service and researchers.

UL and the HRI will support PPI in a variety of different ways. Activities include:
• Support researchers across a range of disciplines to mainstream PPI through a variety of formats
• Integrate PPI into organisational strategy and policies.
• Collaborate with researchers to show how PPI can benefit a study, how appropriate PPI contributors can be found.
• Deliver or facilitate training to researchers on how to involve the public and patients.
• Engage with patient representative groups, such as charities to develop approaches that would be aligned to patients and the research community.
• Forge links with colleagues internationally so that their experience can be adapted to the Irish context.
• Develop a network of practice with other institutions to tackle common issues and shape future PPI interventions.
• Introduce incentives for good PPI initiatives.
• Organise events such as conferences and summer schools to promote learning and engagement.