Patient & Public Involvement (PPI)
We and our members sit at the interface of the health research community and the general public. Many of our member organisations were started by or heavily involve people affected by health conditions and all are focused on improving lives through research. They play a very important role in highlighting the perspectives of the people they represent in research and in ensuring that the patient and public voice is central to research decision-making.
HRCI’s journey in PPI in Ireland began in 2014, when the focus of our first IHRF event was on PPI. To our knowledge, this was the first ever Irish event on PPI. PPI remains a very strong focus for HRCI and we work to support our members in their PPI activities and to improve PPI nationally.
We work to improve PPI in Ireland in the following ways:
- Supporting our members in their PPI activities, through a PPI Shared Learning Group, in which approximately half our members participate.
- Organising meetings and conferences on the topic of PPI
- Working with the Health Research Board to including PPI in the Joint Funding Scheme process.
- Being a national partner on the National PPI Ignite Network and co-leading one of its five work packages.
- Being a member of the UK-based Charities Research Involvement Group.
We have also produced a range of PPI guidance tools and publications, including:
Making a start: A toolkit for research charities to begin a PPI relationship, which guides charities or others through the very important first steps in PPI (developed in partnership with Trinity College Dublin).
PPI case studies in Joint Funding Scheme Projects, which talk the reader through the approach outlined in grant applications that scored very highly for PPI.
Supporting PPI in industry-led research: guidance for charities, which offers practical advice on how to effectively participate in industry-led PPI (led by the Charities Research Involvement Group).
Developing a PPI strategy: A guide, which provides practical advice on developing a PPI strategy for charities or other research-focused groups.
PPI in health research in Ireland: A review of progress to date. This 2016 paper, prepared for a HRCI conference on PPI, is useful in assessing how PPI has progressed over recent years.
IHRF publication on PPI in health research. This 2015 publication was prepared following the first Irish Health Research Forum conference which was on this topic of PPI. To our knowledge this was the first national event on PPI and the publication aimed to encourage and guide the health research community to embrace PPI. The oft-cited IHRF PPI spectrum (see below) was developed for this publication