PPI in the HRCI/HRB Joint Funding Scheme – Exploring diet quality in Cystic Fibrosis
7 min read - 26 Oct 2021
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 role of Cystic Fibrosis Ireland in the application
Cystic Fibrosis Ireland (CF Ireland) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis (CF) in Ireland. The charity participated in the 2019-2020 round of the HRCI/HRB Joint Funding Scheme and co-funded (with the HRB) a successful project designed and delivered by the University of Limerick on diet quality in CF. As a patient representative organisation, CF Ireland prioritises the funding of patient-centred research and has a strong commitment to PPI.
The research project
The aim of this project is to explore diet quality in CF and its impact on disease and quality of life. The proposal sets out a mixed methods design, gathering data via food diaries and food frequency questionnaires to look at the dietary inflammation potential of the diet with health-related quality of life in CF. Online focus groups will also be conducted to explore drivers for current dietary patterns and enablers and barriers to eating a healthy diet.
Setting out the PPI approach in the application form
PPI is integrated as a core aspect throughout the application. This started with the approach to setting up the multi-disciplinary research team. The team is led by the principal investigator (PI), Dr Audrey Tierney, Senior Lecturer in Human Nutrition and Dietetics in the School of Allied Health, University of Limerick. She is supported by 5 co-applicants and 8 collaborators, including Dr Jon Salsberg, Senior Lecturer in Public and Patient Involvement (PPI), Ms Liz Jacques, Regional Development Officer with Cystic Fibrosis Ireland and TLC4CF (a charity affiliated with CF Ireland that aims to improve services and supports for people with CF in the mid-west region of Ireland) and a patient advocate with CF Ireland, Ms Caroline Heffernan. The overall PPI approach set out by the applicants is supported by the HRB-funded PPI Ignite Team in UL who are involved in the design of the planned PPI component of the project and will support the PPI work throughout the project.
The applicants incorporated PPI in their research design and methodological approach through basing the choice of some of their Patient-Reported Outcome Measures (PROMs) on a James Lind Alliance (JLA) priority-setting initiative . Planned online focus groups with people with CF are also described in this section of the application. The applicants propose that questions for these focus groups be developed by researchers along with stakeholder input from the PPI collaborators on the team, to ensure the interviews will elicit information on the themes important to adults with CF.
The section on project management also incorporates PPI. The applicants propose setting up a PPI advisory group to include representatives from the research team (including the PPI collaborators) and additional patient and health care representatives. The advisory team has a number of roles, including overseeing and advising on the management of the PPI aspect of the research, assisting in the design and delivery of the research (especially regarding the online focus groups with people with CF), ensuring the accessibility and appropriateness of the language used in patient information leaflets and consent forms, and taking part in the evaluation and dissemination of the research.
In the section on public involvement in the research project the applicants describe how their approach to PPI started well in advance of preparing the application by meeting with the CEO of CF Ireland and a patient representative. This led to the identification of diet in CF as a priority topic for further exploration. The multi-disciplinary research team, including PPI collaborators, worked together to refine the overall research question, taking into account the needs of the target population, as well as to select appropriate outcomes and enhance service user engagement. Within in this section the applicants describe how the PPI advisory group will have meaningful input into all stages of the research life cycle. The applicants state that the principles of participatory health research will be used to inform how PPI representatives would be supported in the proposed research. This will be bolstered by the provision of training for PPI representatives via the annual University of Limerick PPI Summer School (which is open to anyone).
The applicants’ impact statement presents anticipated outcomes, clinical significance, and impact on clinical practice. The applicants state that their PPI approach, through thorough consultation with people with CF, health care representatives and representatives of CF Ireland, will generate long-term impact on guideline development, practice change, and parental involvement in improvement of dietary quality in CF over the longer term.
Finally, the dissemination and knowledge exchange plan includes a strong focus on PPI, with target stakeholders including people with CF and their families and patient organisations. The dissemination strategies proposed by the applicants are based upon continuous engagement with patient representatives and service users, involving a wide range of dissemination channels (newsletters, dedicated website, information seminars, and advocacy campaigns) and a layperson’s summary for distribution to key stakeholders.
Strengths of the PPI plans in this application
This case study is an excellent example of how to integrate PPI throughout the lifecycle of the proposed research. PPI is incorporated from the very inception of the research study, from defining the research topic through to selecting suitable measures and devising questions for the focus groups, to project management, and finally to shaping the impact of the research and dissemination of findings.
Particular strengths in this approach are initiating PPI well in advance of preparing the application, the inclusion of PPI specialists and collaborators as formal co-applicants on the application, building on the results of a James Lind Alliance priority setting exercise to inform data collection measures, setting up a PPI advisory group to oversee and shape the PPI input into the proposed project, leveraging training for PPI representatives and securing ongoing PPI support via the PPI Ignite team at the University of Limerick.
Suggestions for future applicants
The cost of covering expenses for PPI contributors, associated with their activities on the projects, should always be included in the budget section of funding applications. It is worth also considering offering a payment or token of appreciation for the time of the PPI contributors, which is a tangible appreciation for their input and can help with recruitment. It is a good idea to consult with them, along with your research office, to assess what form of reimbursement or payment is most appropriate.
7 min read - 26 Oct 2021