Background to the case

About HRCI and its members 

Health Research Charities Ireland (HRCI) is the national umbrella organisation of charities active in health and medical research, together representing over 1 million Irish patients. Through support and advocacy, we represent the joint interests of our 40+ members, working to improve health and prevent illness through research. We also fund and manage the Irish Health Research Forum, bringing together all stakeholders to improve health research in Ireland. It is our core belief that today’s health research is tomorrow’s healthcare. 

The HRCI/HRB Joint Funding Scheme 

The HRCI/HRB Joint Funding Scheme is a unique scheme that brings together members of Health Research Charities Ireland (HRCI) and the Health Research Board (HRB) to co-fund research projects of key relevance to member charities. For successful projects, the HRB contributes 50% of the cost of the project and the HRCI member charity contributes the remaining 50%. Very small charities currently contribute 25% of the cost and the HRB contributes 75%. The HRB makes an annual contribution of approximately €1 million to successful projects. Each award is worth up to a total of €300,000 (combined charity and HRB funding) for projects from 12 to 36 months’ duration. Public and patient involvement (PPI) has been integrated as a fundamentally important aspect of the Joint Funding Scheme. The HRB includes specific questions about PPI in the application form and the Review Panel includes PPI reviewers who review the PPI aspect of applications. 

The proposed research project

This case study presents an example of an application to the Joint Funding Scheme that, while not ultimately funded by the scheme, was deemed fundable by international reviewers who specifically singled it out as having an excellent approach to PPI.

The role of the Irish Nephrology Society in the application The Irish Nephrology Society’s purpose is to promote education in the field of nephrology and to foster research in nephrology. Its mission is to ensure a high-quality standard of care for patients with kidney disease by promoting the highest standard of medical practice. The society participated in the 2019-2020 round of the HRCI/HRB Joint Funding Scheme.  One of the applications that was assessed for co-funding (with the HRB) was a proposed project designed by researchers from the National University of Ireland Galway (NUIG) on immune profiles of adverse clinical trajectories in Diabetic Kidney Disease (DKD).

The aim of this proposed project was to advance the use of new blood tests for inflammation to help identify and treat DKD from its early stage, and to learn how this new knowledge can be best incorporated into clinical care settings that match patient expectations and preferences. The applicants proposed a mixed-methods design, gathering clinical data via 4 study visit clinics and conducting a survey to gather data on patient preferences for early-stage DKD monitoring. Qualitative data were to be gathered via PPI collaborators, 3-4 patient focus groups and 5-10 individual interviews.  

Setting out the PPI approach in the application form

PPI was integrated as a core aspect of the proposed research in the application and the research team included PPI expertise and collaborators. The proposed team was led by Professor Matthew Griffin, Professor of Transplant Biology and Consultant Nephrologist in the School of Medicine, National University of Ireland Galway (NUIG). He was supported by 3 co-applicants and 6 collaborators. Members of the research team with specific experience in PPI included Professor Seán Dinneen, Professor of Diabetic Medicine and Consultant Endocrinologist and the Lead for the new National PPI Ignite Network, Dr Michelle Queally, Lecturer in Economics, who was appointed “Public Patient Involvement Catalyst in Economics” at NUI Galway in 2018, Ms Edel Murphy, Programme Manager with the National PPI Ignite Network, and Ms Anne Daly, a nutritional health coach who lives with type 1 diabetes and was a PPI collaborator on the project team. The overall PPI approach set out by the applicants was shaped by Edel Murphy and Anne Daly.

Notably, PPI was incorporated as a core objective of the proposed study in this application. This was first set out in the project abstract and was discussed in more detail in later sections.
The section on current knowledge and background to the proposed research discussed PPI in relation to the contribution that the multi-disciplinary research team’s expertise and track record in PPI initiatives could make to developing optimal approaches to the monitoring and management of early stage DKD.  

In the section describing the aim and objectives of the proposed study, PPI was incorporated through collaborating with a group of patients and the public in order to develop patient-informed information and consent materials, develop a “messaging strategy” for the research, deliver a patient information event to inform patients about the proposed research, and develop themes and a design for a focus group.

The applicants describe in more detail their proposed PPI activities in the section on research design and methodological approach. They set out the need to incorporate PPI from the initial phase of the project and the applicants had liaised with PPI Ignite @ NUIG who developed a methodology that would be used to form a public and patient advisory panel consisting of 4 adults with Type 2 Diabetes Mellitus (T2DM) and 2 family members. PPI activities were also represented through collaboration with PPI Ignite @ NUI Galway to host a Patient Information Event. The applicants emphasised that they had already started to establish the PPI advisory panel in advance of submitting the application.  

The section on public involvement in the research project set out a detailed description of the proposed PPI approach. The applicants also described the role of the PPI advisory group across the proposed research study in more detail. They set out 5 main tasks for the advisory group: 

  1. Developing a DKD information package for people with T2DM and their family carers using clear, accessible and tailored language and key messages.
  2. Developing participant information and consent materials for the study.
  3. Planning the focus groups: identifying who should attend, determining how best to recruit participants, and developing recruitment materials. 
  4. Preparing the survey component of the discrete choice experiment and influencing the final wording used in the survey to ensure it was relevant and accessible to people with T2DM.
  5. Interpreting the results of the discrete choice experiment and developing a plan for sharing the results of the study with participants.

As part of the impact statement the applicants stated that their PPI approach would result in patient-informed information and learning resources about early stage DKD that would improve communication between health care professionals and people at risk of DKD.  

The dissemination and knowledge exchange plan included a strong focus on PPI and specified patients with DKD, their family carers and patient representative organisations as specific audiences for the outputs of the proposed research. The applicants pointed to the direct collaboration with patients and families as a key strength of the approach to dissemination and knowledge exchange. This was complemented by the proposed Patient Information Event to extend dissemination to the wider target population, along with a multi-pronged approach targeting patient representative organisations, social media, and patient networks. It was planned to enhance this through the support of PPI Ignite @ NUIG and PPI collaborators on the research team. Finally, it was proposed that dissemination of the outputs of the research to the public would be optimised by participation of members of the research team in events organised by an education and public engagement programme (CÚRAM).

In the section detailing personnel to be funded through the project funding for a dedicated qualitative researcher was requested at 50% FTE. The applicants also took the opportunity to highlight the importance of the role that PPI Ignite @ NUIG would play in providing the necessary PPI expertise, resources and experience in the section on host institution infrastructure and support.  Notably, the project budget included costs for patient collaborator meetings across years 1 and 2 of the proposed research and included typical compensation for time and travel of patient collaborators along with the cost of refreshments.

Strengths of the PPI plans in this application  

This case study is an excellent example of integration of PPI throughout the research lifecycle from the planning and development phases, through recruitment, data collection, to data analysis, ensuring impactful research and dissemination of the results. Integration of PPI was also achieved by the incorporation of PPI as a core objective of the study. This ensured that PPI was recognised as an integral part of the proposed research, rather than a more superficial exercise run in parallel with the study.  

Other strengths in this approach were the inclusion of PPI specialists as core members of the research team, the concrete specification of how the research team would contribute to the PPI approach, the inclusion of PPI across many different sections of the application form, setting up a PPI advisory panel to oversee and implement PPI at all stages of the proposed research, and the development of a multi-pronged approach to dissemination and knowledge exchange that leveraged the resources of team members and of PPI Ignite @ NUIG.
Notably, the resources required for successful PPI were meticulously accounted for through the specification and costing of funded personnel the detailing of the resources and support offered by PPI Ignite @ NUIG, and the costing of PPI collaboration meetings.

Suggestions for future applicants
  1. You may wish to consider a priority-setting exercise to identify the top research priorities for your target patient group, and/or to refine your chosen research topic into a research question that is impactful, timely, and relevant to the member charity, patients and the public.
  2. It should be noted that it is possible to do PPI in lab-based research, although this may pose different challenges in comparison with clinical research. PPI in lab-based research can help identify research priorities, add meaning and value to the research by linking it directly to the human needs and experiences of patients, help you think differently about the condition you are studying, raise questions that you may not have thought of, and inform the direction of future research. An online guide has been produced by Parkinson’s UK, the Alzheimer’s Society and the NIHR in the UK on how to conduct PPI in lab-based research. 
  3. Many of the HRCI member charities are skilled in PPI and the charity that you are submitting your application to might be able to advise or support your PPI. If you are based in an Irish university, your local PPI Ignite team will also be able to advise.