Diversity and inclusion of PPIE groups

Inclusivity is central to our work at Versus Arthritis. We strive to include people from a range of diverse cultures, ages, geographies, disabilities and ethnicities in our work, and hope this page will help you to do the same.

We know that diverse ethnic groups are under-represented in health research, which can mean healthcare treatments and services are less safe, accessible, and effective for these groups. The INCLUDE Ethnicity Framework shares through a video, the need for inclusivity in research, right from the beginning of a project.  

It is important to make your PPIE group diverse, and as representative of the population as possible. We do recognise that this can sometimes be a challenge, and also appreciate that some project outputs and impacts could be directed towards a certain subgroup of the population. 

Improving the diversity of voices in PPIE partnerships may involve proactively seeking out communities who are underrepresented. 

• Language - talking about your research in a way that everyone can understand will ensure a wide range of people can meaningfully contribute to shaping your work. Read our advice on this here. 
• Time to engage - Whilst establishing your PPIE group, set aside meeting time to discuss and agree together how people will be involved.
• Active Listening - Actively listen to the lived experiences and establish together how this relates to your research.
• Diversity - Explain why it is important that diverse communities contribute to your research and explore together how outcomes could benefit their communities.
• Terminologies - Remember that different people living with arthritis may prefer to use different terminology to define public involvement roles when co-creating research together. This can be culturally relative, so it can help to decide this together.
• Power Relationships - Be aware of power relationships in your partnerships and explore strategies to minimise this:
  • Consider inviting research partners to contribute in groups and plan engagements so that minority voices do not feel isolated in their contributions.
  • Active facilitation skills and building rapport with research partners can help.

• Your Rheum is a group of younger people (aged 11-24) with MSK conditions who are supported by Versus Arthritis. They influence research and you can talk to them about your project. 
• 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.

To build your understanding:

• The Black Women in Science podcast series.
• Oxford Population Health have developed a guide and a film that explores how to increase the engagement of people who are currently under-represented in research. 
• NIHR toolkit - addressing some of the points in this report can provide really useful insight into increasing diversity in PPIE activities.
• Page 19 of the Steadfast Toolkit gives recommendations of how to facilitate conversations with young people. 
• Arthritis can take a toll on mental health. The McPin Foundation’s Young People’s Involvement in Research team is regularly asked what they have learnt from working with young people. They have summarised their learning in a resource that could help others who want to work with young people.

To help with planning:

• Accessibility checklist for events and another accessibility checklist that helps with identifying the barriers disabled people could face.
• How to meaningfully involve people of colour in decisions: Wellcome's anti-racist principles, guidance and toolkit | Wellcome (Principle 3: Involve).
• This guideline Ethical Practice Guidelines for Public Involvement and Community Engagement - ARC (nihr.ac.uk) signposts to integral areas to consider, and includes a checklist, about ethical aspects of your research involvement. 
• McPin Foundation guide to make meetings more welcoming, accessible and inclusive for neurodivergent people. 

For the people you involve: 

• Clinical Trials, An easy read guide: useful for sharing with your PPIE group.