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

Design stage

• Help clarify the research question
• Co-design project
• Ensure the methodology is suitable
• 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

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 use

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 the public.
• 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.

• Consider what voices need to be heard when planning your research.
• Think about the challenges of involving PPI as well as the opportunities.
• Ensure appropriate diversity and representativeness.
• Be clear about what your expectations are.
• Factor in cost and time resource implications.
• How will you navigate confidentiality issues.
• Link in with the PPI Ignite Network team.

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.

Where members of the public, patients or carers 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.

Including public reviews into panel decision making is part of the process for most funding calls.  For some schemes, public reviewers are included as panel members.

Generally, public reviewers provide written reviews. This is in addition to feedback on the scientific aspects from international peer-reviewers. Feedback on the quality of PPI is provided by two public reviewers for each application ahead of the panel meeting.

All of the 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.

Public reviewers will only assess the quality of PPI in the application and will provide comments and an overall rating which will be shared with the panel.

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 new resource to help lab-based researchers with PPI.