Public Patient Involvement (PPI)
Public involvement in research in Ireland sits in a changing and evolving environment. There is now a greater commitment to and acknowledgment of, the importance and contribution public involvement can make to research. There are now far more organisations and individuals supporting public involvement (for example IPPOSI) and there are also many more researchers and research funders working alongside the public for the first time (for example the Health Research Board).
Funders of Clinical research now advocate for PPI approaches to be embedded in research projects. For example, the HRB Strategy 2016 – 2020: Research. Evidence. Action. includes a commitment to develop and promote public and patient involvement (PPI) within the HRB and in HRB-supported projects and programmes.
The HRB CRF-C can provide the support and advice to investigators on how to address PPI issues in funding applications and how to incorpoate PPI approaches into funded research. See below for further details.
The HRB CRF-C use the definition of PPI proposed by INVOLVE UK (www.invo.org.uk): Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. We also use the INVOLVE definition of the term ‘public’ which includes patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.
Involving members of the public in research can improve quality and relevance. It can:
- provide a different perspective – even if you are an expert in your field, your knowledge and experience will be different to the experience of someone who is using a service or living with a health condition
- make the language and content of information such as questionnaires and information leaflets clear and accessible
- help to ensure that the methods proposed for the study are acceptable and sensitive to the situations of potential research participants
- help to ensure that the research uses outcomes that are important to the public
- identify a wider set of research topics than if health or social care professionals had worked alone
- help you increase participation in your research by making it more acceptable to potential participants.
In addition to improving relevance and quality of research, it ensures that research is influenced by broader principles of citizenship, accountability and transparency.
Typically funders of Clinical research now advocate for PPI approaches to be embedded in research projects. For example, the HRB Strategy 2016 – 2020: Research. Evidence. Action., includes a commitment to develop and promote public and patient involvement (PPI) within the HRB and in HRB-supported projects and programmes.
Funders like the HRB will want to see ‘Public and patient involvement’ as an active partnership between members of the public and researchers in the research process. In the past the literature suggested that there were different levels of PPI, described using terms like 1) consultation (e.g. involvement in the choice of research topics); 2) collaboration (assisting in the design and advising on the research project); and 3) user controlled (carrying out the research ) (Involve, 2012). However, it has now become clear that in practice researchers can use a combination of these three and it is more helpful to describe them as approaches rather than levels. For funders the key issue is that those for whom benefit is intended should be at the heart of decision-making within the project.
Providing evidence of PPI in Research applications:
In the funding applications, you will typically be asked to describe any public involvement in your research throughout the various stages of the research cycle (i.e. research design, conduct, analysis and dissemination, etc.). Ideally you should be able to demonstrate PPI in the following areas:
- Please provide details of where there has been public involvement in the preparation and/or design of this application.
This may be described as Consultation (Involve, 20121) with Patients or the Public. Have you consulted with patients to identify your research priorities, to prepare you proposal or to design your study? Examples of such consultation included:
- Informal patient participation in focus groups/interviews/surveys on your research agenda
- patient participation in workshops or other open forum interactions with researchers
- patient/carer advisory groups to comment on research projects/research design.
If you have not consulted Patients/Public in your research design, don’t worry. You can talk about how you will incorporate PPI into the other stages of the research cycle (below)
- Provide details of proposed future public involvement in later stages (e.g. conduct, analysis and/or dissemination).
This may be described as collaboration (Involve, 2012) with Patients or the Public. Do you plan to identify appropriate patients or members of the public to collaborate as members of the research team on any/all elements of a research project? For example:
- Study conduct – become a member of a Study Steering Committee, reviewing study materials, etc.
- Analysis – assist with interpretation of findings, develop recommendations for future research, etc.
- Dissemination – advise on how to publicise results, presents findings at conferences, etc.
Consider the following. How do you propose to identify appropriate patients to fulfil these role? Who will you involve? What activities will they carry out? Have you included PPI costs in the study budget?
PPI in Funding Applications
The HRB CRF-C can support and advise investigators on how to address PPI issues in funding applications.
- PPI Content for Funding applications:
The HRB CRF-C have experience in addressing PPI issues in a variety of funding calls/awards. We can work with investigators to develop text which describes any public involvement in their research throughout the various stages of the research cycle (i.e. research design, conduct, analysis and dissemination, etc.).
- PPI Budget
Typically funders will insist that where members of the public/patients are involved, they must be compensated for their time and contributions and that this should be reflected in the project budget.
The HRB CRF-C can provide advice on appropriate budgets for the full range of PPI activity in clinical research. This guidance is based on the estimates for PPI activity developed by the national PPI in Clinical Research Working Group and guidance developed by INVOLVE (Involvement-Cost-Calculator, 2018). PPI costs may include:
- Payment & Reward: Payments and rewards for members of the public in recognition of time, skills and expertise.
- Expenses: Out of pocket expenses that members of the public will incur by getting involved.
- Involvement activity: The cost of the specific activities for involving members of the public (e.g. hiring rooms/refreshments for patient training)
- Involvement staffing: Costs of any staff required to support or carry out involvement in research (e.g. PPI coordinator/facilitator, administration, etc.)
The HRB CRF-C can provide support to investigator who wish to integrate and embed PPI in a funded research project. Due to resource limitations, the HRB CRF support is limited to Collaboration approaches (Involve, 2012) with Patients or the Public.
HRB CRF- C support for PPI Collaboration activities
For projects that plan to identify appropriate patients or members of the public to collaborate as members of the research team on any/all elements of a research project the HRB CRF-C can provide the following supports:
- Template Terms of Reference (in development)
- Template Role description (in development)
- “Do’s” and “Don’ts” of incorporating patients/members of the public as members of a research team/ steering committee – Information for Researchers
- Guidance on PPI Budgeting
- Guidance with organisational issues:
- payment and expenses policies
- travel and expenses claim forms
- methods for paying people (including tax and national insurance deductions)
- confidentiality agreements – ask all members of the research group to sign a confidentiality statement, not just the members of the public
- health and safety
- insurance and indemnity
- Garda Vetting (if appropriate)
- Access to the PPI in Clinical Research Working Group Repository of existing PPI expertise
Patient & Public Involvement (PPI) in research is gaining momentum in Ireland and is of increasing relevance to many health research stakeholders. In the area of Clinical Research, the importance of early, meaningful, and systematic patient & public involvement has never been higher. In order to help establish good practice in PPI in Clinical Research in Ireland and to provide guidance for interested clinical researchers and the public, an online repository of relevant PPI documents has been launched at the IPPOSI website link below:
How was this created?
The repository was created by a multi-stakeholder Clinical Research PPI Working Group (CR-PPI-WG), which works collaboratively under the HRB-CRCI and IPPOSI umbrellas to promote active and meaningful PPI as part of the infrastructure for clinical research in Ireland. Working Group members include representatives and staff members from IPPOSI, HRB-CRCI, Clinical Research Facilities and Centres, Hospitals, Universities, Patient Groups/Charities and the Healthcare Industry.
The tools and resources available on the repository are accessible in six key folders:
• How to do PPI
• Planning for PPI
• Working with the public
• Evaluating and measuring impact
• Designing Patient Information
• Guidance for Public
The Working group will continue to maintain and grow the repository as part of its ongoing work plan. Anyone interested in joining the CR-PPI-WG can do so by contacting the IPPOSI office at firstname.lastname@example.org and/or the HRB-CRCI office at email@example.com
We hope you find this a useful resource and welcome your feedback.
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