Patient Involvement in arthritis research 

What is Patient Involvement?  

Patient involvement refers to a person living with arthritis, or their partner, family member or carer acting as active partners and leaders in research activities.     

Patient involvement can take many forms, all of which are valuable at different stages of your project. Good practice is to 'do with' and work in partnership. For example, asking people to review plans or communications, is important, but better still, you might work jointly and produce shared plans and objectives from the outset.

What difference does involvement really make to research projects, outcomes and people with arthritis?   

Versus Arthritis involvement expectations 

Versus Arthritis endorse the UK Standards for Public Involvement and expects that these will be adhered to throughout your Public and Patient Involvement activities.

In addition, we have worked with people with arthritis to develop guidance around involvement in our activities and those conducted by our researchers. Take a look at these best practice guidelines for further advice. 

What could involvement in research look like in your work?  

Research involvement should happen at every stage of the research cycle, in all types of research projects 

You can look at tips and resources to involve people at each stage of your study through our research cycle pages below.  

Things to remember when involving people with arthritis: 

• 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.  
• If this is your first time holding a focus group/workshop then ensure that the venue is accessible people with varying forms and severities of MSK conditions and that they are able to access necessary facilities.