The HRB recognises that the nature and extent of meaningful public involvement is likely to vary depending on the context of each study.
Grant applicants are always asked to describe any public involvement in their research.
Involvement can happen throughout the research cycle and researchers are encouraged to start thinking about this from as early as possible when planning their research, including the setting of the research question.
Members of the public involved in a research study are referred to as PPI contributors. PPI contributors should be actively involved and part of decision making. PPI contributors are not participants in a research study but are members of the research team. PPI contributors should come from the relevant people and communities impacted by the research topic.
PPI in the research cycle
PPI in research can happen throughout the research cycle and shape the way research is carried out. Here are some examples of PPI at different stages of the research cycle.
Identifying & Prioritising stage
- Service users, carers and members of the public can help inform research priorities. This might include work completed by others, such as relevant charities, the James Lind Alliance Priority Setting Partnerships and other formats.
Design stage
- Help clarify the research question
- Co-design project
- Ensure the methodology is suitable and outcomes are relevant to those affected
- Assist with a recruitment strategy
Undertaking/Management stage
- Assist in collecting data & carrying out interviews
- Representation on project steering & governance groups
Analysing & Interpreting stage
- Work with the research team to interpret data, develop themes & contextualise findings
Dissemination stage
- Share knowledge on where best to share the findings
- Present the findings
- Help write up dissemination materials
Implementation stage
- Build relationships with knowledge users
Benefits of PPI
Involving members of the public in research can improve quality and relevance of research. 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 the service or living with a health condition.
- Help to ensure that the research uses outcomes that are important to those affected.
- Identify a wider set of research topics than if health or social care professionals had worked alone.
- 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 you increase participation in your research by making it more acceptable to potential participants.
PPI what to consider
- Consider what voices need to be heard when planning your research. One PPI contributor is generally not enough!
- Ensure appropriate diversity – this might for example be age, gender, ethnicity, or different subgroups of patients, or urban/rural settings etc depending on the research topic.
- Think about the challenges of involving PPI as well as the opportunities. What would make it easier for PPI contributors? This might include for example the need to initially build relationships and trust; location and time of meetings which suit PPI contributors; physical/virtual mix; supports needed etc.
- Have a ‘first draft’ of how the PPI could work and then develop the approach jointly with your PPI contributors.
- Be clear about what your expectations are and be open to hearing the expectations of potential PPI contributors.
- Not all PPI contributors need to have the same role. Some individuals might take on more responsibility, others might contribute at specific times only, subject to their own health and circumstances.
- Make sure that all PPI tasks are the responsibility of one or more specific persons in the team.
- Factor in cost and time implications.
- How will you navigate confidentiality issues.
- Link in with the PPI Ignite Network team.
Finding PPI contributors
New researchers often wonder how to find PPI contributors. Edel Murphy, National Programme Manager with the PPI Ignite Network shares her advice in this blog.
PPI budget in grant applications
Where members of the public or patients are involved, they must be compensated for their time and contributions. Don’t underestimate your budget for involvement.
Costs associated with public and patient involvement in research might include: –
PPI contributor costs:
- Payment for PPI contributors’ time;
- Payment for time spent reviewing material
- Costs of participation in advisory groups
- Travel expenses for PPI contributors;
- Costs associated with PPI contributors attending conferences, workshops or training, including companionship, where relevant;
- Childcare costs for PPI contributors while attending events, meetings, etc;
Other PPI costs:
- PPI event facilitator costs;
- Room hires for PPI events/meetings;
- Hospitality for PPI events/meetings;
- Training in public, patient and carer involvement in research
All costs must be in line with the Host institutions policies.
PPI & the HRB review process
In the HRB selection process, applications first receive written feedback. Including public reviews into panel decision is part of the process for most funding calls. For some schemes, public reviewers are included as panel members.
The scientific aspects of each application are assessed by international peer reviewers. Public reviewers provide written reviews on the quality of the PPI, with two public reviewers for each application.
All reviewers’ comments (both public and scientific) are passed on to the applicants, who have the opportunity to respond. The reviews and the related applicant responses are made available to the panel before they meet. Following discussion, the panel then makes a recommendation to the HRB which applications to fund.
PPI & lab-based research
Researchers working in a laboratory may have limited contact with people affected by the condition they are researching. This can seem like a challenge when applicants are asked to consider PPI in preparing grant applications. However, it is important to involve people as early as possible in laboratory-based research. This can help researchers focus on what is important to people in their area of research.
Practical guidance has been developed by Parkinson’s UK in partnership with Alzheimer’s Society and University College London Hospitals (UCLH) Biomedical Research Centre. They have developed a resource to help lab-based researchers with PPI.