PPI in Conducting and Monitoring Research.

Once you have worked in partnership to design your research and apply for funding, it is important that you continue to involve people in how you conduct and monitor your research.

People with lived experience are interested in monitoring the progress of projects. This can sometimes take the form of PPIE members being involved in steering committees and project groups. At these meetings, researchers and people with lived experience can discuss progress and solutions.

Here’s some ideas for how you could involve people  

Data collection and interpretation

  • Collect, analyse, or interpret data - provided training is available, you can involve people affected by arthritis in data collection, helping to develop questionnaires.
  • Identifying gaps in data or providing insight into future research questions from the perspective of someone who is living with the condition.
  • Contributing perspectives to qualitative data analysis (e.g., development of themes, sense checking, identifying and mitigating research bias)
  • People with arthritis can help evaluate your research findings and the impact they will have from a patient perspective.

Informing on materials

  • Inform the design of materials – you could ask people to comment on leaflets, questionnaires, communication material and consent forms to make sure your language is appropriate.
  • You can discuss how people living with arthritis would respond to your findings and support you to adapt recommendations or interventions from research outcomes.
  • Continued input into documentation by people with lived experience, including publications and presentations to disseminate results.

Governance

  • Contributing to the governance of research (membership of management or steering groups).
  • In project groups and meetings, e.g., trial management teams, steering committees, project update meetings. This should include clear and structured terms of reference and roles. Best practice would see people with lived experience taking a co-chair role.
  • Help identifying participants.
  • Training and sharing lived experience with the whole research team.

Things to remember when involving people with arthritis at this stage

  • Involving people at this stage can help connect you with networks of people affected by arthritis, develop your recruitment and retention plans and resolve any problems you might face.
  • Ensure regular communication and feedback to people with lived experience, including sharing of results and impact of their contribution. PPIE members and researchers alike feel value in the PPIE members being kept up to date with a project’s progress.
  • Continued support and learning for people who are involved, with opportunities to find out more about the project or visit lab spaces.
  • Provide routes for people with lived experience to raise concerns or challenge decisions.
  • Collecting information about impact of PPI on the people, project and organisations - co-producing lessons learnt for future PPI.

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.

Resources

Case studies

Case studies

Early Diagnosis of Systemic Sclerosis in the General Rheumatology Clinic

Read how researchers worked with people with lived experience when developing an artificial intelligence (AI) system that helps rheumatologists to diagnose systemic sclerosis as early as possible. 

Early Diagnosis of Systemic Sclerosis in the General Rheumatology Clinic
CRIISP Consortium

Read about the Consortium to Research Individual, Interpersonal and Social Influences in Pain (CRIISP) and how researchers involved people throughout; developing an involvement workstream and advisory group to provide input throughout the course of the project.

Criisp Consortium
Multi-level Integrated Data for musculoskeletal health intelligence and ActionS (MIDAS)

Read more about how we want to develop a fuller picture of musculoskeletal health, risk, and care across North Staffordshire & Stoke-on-Trent to provide more useful, timely and trustworthy evidence for policymakers, planners, health professionals, and the public.

Multi-level Integrated Data for musculoskeletal health intelligence and ActionS (MIDAS)

Continue your involvement across the research cycle