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

We have heard from our researchers, including those in discovery and lab-based science, that they benefit from involving people with lived experience at this early stage. It helps guide the research questions, and refine them, or think about and prioritise other research questions.

Involvement of people with lived experience at this stage could be through a discussion or focus group in defining the important priorities or areas of unmet need. It is important to consider existing well-run prioritisation exercises and whether they can be a starting point for your engagement.

Funders will be looking for evidence of collaboration in considering and refining the priorities, scope, and research questions based on lived experience.

Things to remember when involving people with arthritis at this stage:

• 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.
• Building rapport with research partners can help to ensure that people with lived experience feel confident to ask questions and contribute to discussions.

How can Versus Arthritis support you?

• Share advice on patient priorities from Research Advisory Groups.
• Advise on PPI strategy.
• We can share opportunities to shape research with our research partner network (people with lived experience interested in research involvement). Complete this form and send it to us if this would be useful.
• We can support with development of research partnerships where relevant e.g., our Young People and Family Team, organisations in our community involvement network or Your Rheum.

Resources

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: Device Development Blueprint: guidance for early and systematic patient involvement (synapseconnect.org)

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.

Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership | Research Involvement and Engagement | Full Text (biomedcentral.com) - Figure 1 is a visual display of themes and subthemes of setting PPIE partnerships.

Real-Inclusion-Acess-All-Areas-Checklist-1.pdf (inclusionscotland.org) - A document that includes a checklist for inclusivity and accessibility for in- person events as well as online communication.

PPIE Case Studies