Patients, their Families and Carers, and Interested Citizens Involvement in Palliative Care Research
What is PPI?
PPI is a term used in health and social care research. On the island of Ireland PPI refers to Personal and Public Involvement or Public and Patient Involvement in research.
What is PPI in palliative care research?
PPI in palliative care research actively supports and facilitates people with life-limiting conditions, their families, and carers, and members of the public with an interest in palliative and end of life care to be involved in all stages of palliative care research. It empowers PPI volunteers to partake in research decision-making.
“At every step of my research career, the voices of people with intellectual disability have guided, advised and championed the work that I’ve done. Their lived experience has informed so many aspects of my work, they have advocated for research and have provided me with endless enthusiasm to keep moving forward, ensuring that my research has real-world impact. Public and Patient Involvement (PPI) has been a core part of my research approach for many years. Without understanding the lived experience of those we research, we deny ourselves the opportunity for better research, greater impact and deeper insight. Working in real partnership with PPI contributors is not easy, but for those who persevere, the rewards are great.”
Professor Mary Mc Carron,
Director, Trinity Centre for Ageing and Intellectual Disability,
Trinity College Dublin
PPI in palliative care research may include:
Identifying research priorities
Informing research questions
Supporting a research grant application
Sitting on research steering committees
Advising on research participation and recruitment methods
Reviewing and/or co-designing research outputs
Inputting into the development of research events
Attendance and/or participation at research events
Supporting the dissemination of research messages throughout the research project and beyond
Advocating for implementation of the research findings
Why is PPI important?
People’s lived experiences can contribute to identifying gaps in palliative care services, information and supports, and spotlight issues which may not be apparent to the research team and/or service providers.
“I cannot stress enough how important it is to involve PPI members from the very start of any research project. As an example, members of the public were involved in the drafting of a recent successful application to the National Institute for Health Research, Health Services and Delivery Research (NIHR HS&DR). We sought feedback on the importance of our proposed study, what we should focus on in our review and our Plain English summary from members of two established public involvement and engagement groups. I believe our PPI members were integral to the success of this funding application, and this was further evidenced by feedback from the funding panel who welcomed their unique insights into what was important to include in the aims of our project.”
Dr Tracey McConnell, Marie Curie Senior Research Fellow,
School of Nursing & Midwifery, Queen’s University Belfast
How do AIIHPC support PPI?
All Ireland Institute of Hospice and Palliative Care (AIIHPC) can provide members of our Palliative Care Research Network (PCRN), Early Career Researcher Forum (ECRF) and partner organisations with support and guidance when planning and conducting PPI.
Voices4Care
The meaningful involvement of people with a life-limiting illness, their families and carers or former carers, and people from the wider community with an interest in palliative and end of life care, is a core priority for AIIHPC. Voices4Care was set up by AIIHPC in 2013. Membership is voluntary. Members include people with life-limiting conditions, family carers, former carers and citizens interested in improving palliative care. Voices4Care influence the work of AIIHPC and the wider palliative care arena across health and social care in both the Republic of Ireland and Northern Ireland. Members’ contributions make a real difference, and influence palliative care education, research, policy and practice. Voices4Care members welcome opportunities to contribute to AIIHPC PCRN and ECRF members’ research.
For further information contact Dr Mary Rabbitte, AIIHPC Programme Manager; mrabbitte@aiihpc.org.
Helpful resources
PPI Within the Context of Palliative Care Research (Online workshop, held March 2022)
Personal and Public Involvement in Research, Health and Social Care Public Health Agency Research and Development.
Public and Patient Involvement in Research, Health Research Board.
PPI in Clinical Research, The Irish Platform for Patient Organisations, Science and Industry
UK Standards for Public Involvement in Research
Making a start: A toolkit for research charities to being a PPI relationship, Health Research Charities Ireland
New to Research Public and Patient Involvement: A Guide for Not-for Profit and Community Groups, Care Alliance Ireland
eLearning: ‘What is Public and Patient Involvement (PPI)?’, Trinity PPI Ignite Introductory Module
Templates: ‘PPI resources’, Trinity PPI Ignite
Case studies and resources: ‘PPI Hub’, IPPOSI
Designing a tool to support patient and public involvement in research projects, the Involvement Matrix, Smits, DW., van Meeteren, K., Klem, M. et al. Res Involv Engagem 6, 30 (2020). Doi. https://doi.org/10.1186/s40900-020-00188-4
GDPR information:
Health Research Authority (HRA, United Kingdom) GDPR guidance
Health Research Board (HRB, Republic of Ireland) Guidance on Information Principles
