“There is no one-size-fits-all approach when it comes to including PPI in a research project”, says Dr Cody.  “The example below from a team at the Royal College of Surgeons in Ireland (RCSI) and the Central Remedial Clinic (CRC) is a particularly good illustration of how PPI can be incorporated into research, and enhance its significance and potential for real impact. The team fully embedded PPI across the entire project lifecycle.”

Case study: PPI in the HRCI/HRB Joint Funding Scheme

Central Remedial Clinic/Royal College of Surgeons in Ireland: Investigating mental health problems in children and young people with cerebral palsy

Background to the case

The role of the Central Remedial Clinic (CRC) in the application.

The CRC provides services for over 4,000 children and adults across seven different sites in Ireland through a range of clinical services, education, and adult services

The CRC participated in the 2022 round of the HRCI-HRB Joint Funding Scheme. One of the successful applications was a project designed by researchers from the Royal College of Surgeons in Ireland (RCSI) on the prevalence and experience of mental health problems among children and adolescents with cerebral palsy (CP).

The research project

The aim of this project is to investigate how common mental health symptoms and mental health conditions are among children and adolescents with CP in Ireland, as well as identifying risk factors for poor mental health and exploring children and young people with CP’s experiences of poor mental health. The proposal sets out a mixed-methods design, gathering data via a survey of children and adolescents with CP and qualitative interviews with adolescents and young adults with CP and parents of children with CP.

Setting out the approach in the application form

In the 2022 round of the Joint Funding Scheme, applicants were encouraged to show how PPI is included throughout the lifecycle of the proposed research.

Identifying and prioritising

Before preparing this research proposal, the research idea was identified from the researchers’ collaboration with a group of young people with CP on a prior study exploring the transition from child to adult health services. The group advised the researchers to specifically ask study participants if they received support for managing mental health. They identified that adolescence is a particularly challenging time and that adolescents with CP need more help to manage their mental health and emotional well-being. The findings of this prior study identified a lack of data on the mental health of children and young people with CP and the need to further explore the prevalence and experience of mental health challenges among children and adolescents with CP.

Design and methodology

The design of the research project started with the approach to setting up the multi-disciplinary research team. The team is led by the principal investigator (PI), Dr Jennifer Ryan, Lecturer in Public Health and Epidemiology in the School of Population Health, RCSI, who has experience of establishing, co-ordinating and working with PPI panels on previous projects. She is supported by six co-applicants and 3 collaborators. These include Ms Jessica Burke, who is the PPI co-applicant, a researcher and young adult with CP; Dr Claire Kerr, Reader in Rehabilitation at Queen’s University Belfast, who leads PPI for the Northern Ireland CP Register; Dr Jennifer Fortune, Research Fellow at RCSI, who has extensive experience of PPI and who will support PPI in the project; and Dr Manjula Manikandan, post-doctoral researcher at RCSI, who previously established and chaired a PPI panel of adults with CP for her doctoral research and published a report about PPI in doctoral research.

The applicants state that the design and methods of the proposed project were developed in collaboration with the PPI co-applicant. This was done to ensure that the research provides data that targets the needs of young people with CP. Specifically, based on her input, the applicants refined the research question, identified additional potential risk factors to assess in Work Package 1, and included a qualitative study in Work Package 2.

In addition, integral to the design and delivery of the proposed research is the planned recruitment of four young people with CP and fourparents of young people with CP to sit on two PPI panels. The applicants state that these panels will contribute to all aspects of the research. Their specific role in the design of the project’s Work Packages is set out below.

Work Package 1 is a cross-sectional study of the prevalence and risk factors for mental health conditions among children and adolescents with CP in Ireland. In this work package, the applicants state that the list of mental health conditions and potential risk factors to be included will be refined prior to data collection, based partly on discussions with young people and parents on the PPI panels as well as piloting of the survey with parents and adolescents. PPI panels will also be consulted when developing the analytical approach prior to completing data analysis in this work package.

Work Package 2 is a qualitative study of the experiences of mental health problems among young people with CP. Based on the experience of the PPI co-applicant, the applicants decided to include young adults up to age 25 years because they may be better able to reflect on their experience of mental health problems. The applicants also described how topic guides for qualitative interviews will be informed by the knowledge and experience of PPI panel members.

Undertaking and management

The applicants set out a role for the PPI co-applicant and the PPI panels to shape the key issues in the undertaking of the research: reviewing study documentation such as participant information leaflets, advertisements and consent forms. The applicants describe how they will consult with the PPI co-applicant and the PPI panels as well as using guidance from the National Adult Literacy Agency (NALA) and the National Disability Authority (NDA) to ensure that study information is accessible. The PPI co-applicant and the PPI panels will also provide feedback on the accessibility of the research process to people with CP and identify appropriate recruitment strategies.

The applicants plan to set up a Project Management Group responsible for ensuring that all deliverables are achieved in time and within budget. This group will include the PPI co-applicant. It is anticipated that the Project Management Group will decide on and develop all research processes collaboratively to maximise the impact of the research on knowledge users, people with CP and their families, and the Irish health system. The applicants also set out how members of the PPI panels will be identified through the team’s networks, and how they will be supported through clear description of roles and responsibilities, arrangements for reimbursement, and prior identification of needs and supports. It is anticipated that the PPI panels will meet four times throughout the project.

The project budget includes a defined budget line for PPI under running costs. This includes reimbursement for PPI panel members’ time to attend four PPI panel meetings, as well as for the co- applicant to attend four Project Management Group meetings. The applicants also included travel costs for PPI members to attend two of the PPI panel meetings in person.

Analysing and interpreting

The applicants state that the PPI co-applicant and the two PPI panels will contribute their experience of CP to the interpretation of the research findings and identification of implications of the findings for policy and practice.

Dissemination/impact

The dissemination and knowledge exchange plan for this project involves young people with CP and families throughout the process: from the development of the plan with the Project Management Group, to developing dissemination materials for young people and families, to shaping the different dissemination channels and associated outputs. Specifically, the findings of the research will be shared with people with CP and their families, and organisations that provide health and social care services to people with CP and advocate on their behalf. The outputs of the project will include an executive summary and report produced in accessible language, lay summaries and a webinar for young people with CP and their families. The applicants state that young people with CP and their families will actively contribute to developing outputs as they wish: including identifying key findings, formulating recommendations, writing lay summaries, and speaking at the webinar. They emphasise the important role the PPI co-applicant will play in advising on the disseminationand knowledge exchange plan to ensure the findings reach people with CP and their families.

Strengths of the PPI plans in this application

PPI is incorporated from the earliest stages of the research study – defining the research topic – through to selecting suitable measures and planning questions for the interviews, 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 a PPI contributor as a co-applicant on the application along with other co-applicants and collaborators who have prior experience of PPI
  • Specifying clearly how the design and methods are shaped by the PPI co-applicant
  • Setting up two PPI advisory panels to oversee and shape the proposed project throughout its lifecycle
  • Providing concrete examples of how the PPI co-applicant and the PPI advisory panels will input into the two work packages of the study
  • Including the PPI co-applicant on the Project Management Group 
  • Having a defined budget line for PPI including reimbursement for time and travel 
  • Involving the PPI co-applicant and the PPI advisory panels throughout the dissemination and knowledge exchange plan.

Suggestions for future applicants

  1. It may be useful to kickstart plans for your application through an initial workshop or meeting, including the research team, people with lived experience of the condition, their families and others who support them, or members of the public that are relevant to your research. These same people might subsequently become part of your management team or advisory group.
  2. It would be worthwhile to set out relevant steps that applicants would take to help ensure their PPI approach is inclusive and welcomes diversity.
  3. If you have a local PPI Ignite team, it is well worth contacting them at the earliest opportunity. They can advise on all aspects of PPI and support you in designing an excellent PPI approach from the outset. 
  4. Finally, it should be noted that PPI is not a one-size-fits-all endeavour, and not all aspects of the PPI described here may be suitable for use in other types of research. 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.

For further information on the work of HRCI on PPI and the HRCI/HRB Joint Funding Scheme, please contact Dr Sarah Delaney, Research Support Co-ordinator, Health Research Charities Ireland, email sarah@hrci.ie.