PPI in Project design and funding applications

Involving people with lived experience in your project design and the development of funding applications is important. It is crucial to ensuring the quality, relevance and impact of your research. Early involvement gives people with lived experience an opportunity to influence research before key decisions have been made.

We and many other research funders expect to see meaningful collaboration with people with lived experience. For example, that involvement has been included early enough to influence the research, and, that applications should demonstrate what changed or was influenced as a result.

Your application should demonstrate how you have worked in partnership so far and the impact this has had on your design in terms of how involvement has influenced the research, such as affecting the research question, methods, outcomes, participant experience, recruitment, dissemination etc.

Here’s a list of ways you could involve people  

• Contributing to the lay aspects of the funding application, including the plain-language summary and explaining why the research is important and relevant to people with lived experience.
• Contributing to the PPIE sections of the application, including the planned approach to involvement.
• Supporting or contributing to the funding or ethics application as a named contributor or co-applicant.
• Providing evidence of how involvement has influenced and refined the research design.
• Co-producing the PPIE plan, including how people with lived experience will be involved throughout the research project.
• Agreeing roles, expectations and opportunities for involvement at different stages of the research.
• Sharing lived experience with the research team to build understanding on the relevance of the project to everyday experiences. This is especially relevant for lab-based researchers. 

Things to remember when involving people with arthritis at this stage

Consider practical issues such as fatigue, pain, mobility, timing, breaks, travel and accessibility. Create a positive environment - people need to feel safe, secure, equal and included.

• A variety of roles and activities could be offered, for example collaborator, co-applicants, working group member, workshops, document review.
• Be clear about how decisions are made and how different views have been considered.
• Consider what changed as a result of people's involvement and how their contributions influenced the research.
• Use this to demonstrate the value and impact of PPIE in funding applications and throughout the research project.

How can we support you? 

Share your research opportunities with our research partner network 

We can share opportunities to shape research with our research partner network (people with lived experience interested in research involvement). Complete this form if this would be useful. 

Help you to work with young people to shape your research

• Your Rheum is a group for 11-24 year olds across the UK with diagnosed rheumatic conditions, which provides an opportunity for researchers to involve young people with rheumatic conditions in shaping research.
• We can provide letters of support for your applications. Please email researchinvolvement@arthritis-uk.org for further information.
• Take a look at our pages on how to involve people with arthritis in conducting, monitoring and disseminating your research, as early planning is important for you, the quality of your involvement, and will be seen positively by funders

Resources

• Designing research | NIHR helpful guide on ‘How to write a plain English summary’ and thinking about your audience. This links to principles for meaningful involvement of patients and the public in health research.
• How to incorporate patient and public perspectives into the design and conduct of research - PMC (nih.gov) A list of international resources to help and guide with PPIE