PPI in prioritising arthritis research questions 

Involving people with arthritis in research at the beginning of your project 

Involving people with lived experience (PWLE) of arthritis from the start means you can determine, in partnership, why your research question is important, and exactly what needs to be explored. 

Our researchers have told us how much they benefit from involving people with lived experience at this early stage – focusing the researcher on what’s needed and will make real-world impact from the start. Funders and regulators will look for evidence of this activity. 

It is important to consider existing well-run prioritisation exercises and whether they can be a starting point for your involvement.

Here’s a list of ways you could involve people

• Deciding on and developing research questions that are important to patients and the public. 
• Suggesting topics for research. 
• Open discussions, workshops, interviews and focus groups are examples of how you could do this. 
• Discussion to define the important priorities or areas of unmet need. 
• Building relationships with a community group, listening and learning about their concerns and areas of challenge. 

Things to help you begin involving people in your work 

Clarity is important when discussing your research questions with people with lived experience. Remember, they may not have a background in science so it is important to make sure that everyone can follow research discussions by using accessible language around scientific terminology and acronyms. 

A few tips include: 

• Begin your project by agreeing and clearly communicating the purpose and any intended outputs and actions that you and your research team are aiming for.  
• Be honest about expectations from each other; what you as researchers expect, and those of which involved members may have of you.  
• It is helpful to build evaluation into your work to see how far you have achieved your aims so you can make necessary adjustments for next time. 
• Building rapport and trust with people with lived experience can help to ensure that they feel confident to ask questions and contribute to discussions. 

How can we support you

How we can support 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, where you can advise, input and shape current adolescent and young adult rheumatology research.
• We can support with development of research partnerships where relevant e.g., linking you with organisations in our community involvement network. 

Resources

• Device Development Blueprint: guidance for early and systematic patient involvement (synapseconnect.org) - If you are working in translational research and designing products or devices, this link provides some helpful information on shaping priorities in the device development process. 
• Insights into Rheumatic Diseases: Engaging the Public and Involving Patients in Research | Reuben College (ox.ac.uk)  - A blog giving an insight into involving people with arthritis in research, with key points to consider. 
• Getting started: involving people - Learning for Involvement - National Institute for Health Research: Includes bullet points for key factors to be aware of, in addition to links to other learning about involvement resources. 

Case studies