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 a list of ways you could involve people

• 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.
• 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.
• People with arthritis can help evaluate your research findings and the impact they will have from a patient perspective.
• You can discuss how people living with arthritis would respond to your findings and support you to adapt recommendations or interventions from research outcomes. 
• 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. 
• Continued input into documentation by people with lived experience, including publications and presentations to disseminate results.

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?  

Versus Arthritis has a pool of research partners, who, could work in partnership with you to do this as your project progresses. For us to put you in touch with our community of research partners, complete this form and send it to us.

Resources 

Parkinson’s UK have developed a toolkit for keeping your PPIE members up to date with research. These helpful tips could help people with lived experience to monitor the research project.

How to incorporate patient and public perspectives into the design and conduct of research - PMC (nih.gov) a section on ‘Working together ethically’ gives points to consider for PPIE in the monitoring and conducting of your research.

Patient and public involvement in designing and conducting doctoral research: the whys and the hows | Research Involvement and Engagement | Full Text (biomedcentral.com) Table 3: The 10 top tips for working with patients and the public in doctoral studies is helpful for ongoing participation conducting research.

PPIE Case studies

Click here to read how researchers at the University of Leeds included people with lived experience of osteoarthritis in their peer mentorship programme, (RaMIgO Study), as well as ensuring they were included throughout the whole research cycle.

Click here to read about how people with lived experience were involved in the project design, conducting and monitoring in the Understanding and Managing Pain for Thalidomide Survivors (TRIUMPH-TS) project. Researchers worked with people with lived experience to identify the best practice approaches to pain management, leading to a tailored service pathway that meets the unique needs of beneficiaries of the Thalidomide Trust.