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.  

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. 

• 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.

The INCLUDE Ethnicity Framework includes a very poignant video on the need for inclusivity in research, right from the beginning of a research project. 

Accessibility checklist for events: Accessibility checklist | HIS Engage  

Meaningfully involve people of colour in decisions: Wellcome's anti-racist principles, guidance and toolkit | Wellcome (Principle 3: Involve) 

The Black Women in Science podcast series is helpful for increasing your knowledge of diversity within science and PPIE.   

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

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. 

Oxford Population Health have developed a guide and a film that explores how to increase the engagement of people who are currently under-represented, less likely to take part in conversations about research, attend research-related events, join advisory groups or enrol as research participants.   

Neurodiversity is an area that The McPin Foundation has become more consciously aware of through the advocacy of people they work with. In this resource, they share crowdsourced tips from staff to make work meetings more welcoming, accessible and inclusive for neurodivergent people. 

NIHR Research Design Service (2022): Equality, Diversity and Inclusion Toolkit - includes a section ‘How will you support and empower your diverse public involvement group?’ with key questions to consider within your research project.  

In addition to this, NIHR Involve have a great resource to make public involvement with research more diverse and inclusive. 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 isgive recommendations of how to facilitate conversations with young people.  

Your Rheum is a group of younger people, aged (11-24), with MSK conditions who influence research. 

Versus Arthritis’ Young People’s Panel: Young People's Panel (versusarthritis.org) is a space for young people (aged 16-25) who are living with arthritis can influence our support, campaigning, and research work. 

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.