Introduction
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.
It is important to make your PPIE group diverse, and as representative of the population as possible so that your results equitably impact all those affected by arthritis.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.
What to consider before you start
- 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.
Resources
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.
Community Based Participatory Research (CBPR)
Emerging research approaches to improve diversity and inclusion which are supported by Versus Arthritis include Community Based Participatory Research (CBPR). In CBPR, communities equitably share power over decision making and co-create throughout research design, practice and outcomes (Minkler and Wallerstein 2017). CBPR takes place in community settings and involves co-creating with groups of people who have lived experience of arthritis.
CBPR Resources:
How collaborative research is helping us take on arthritis together (versusarthritis.org)
Resources to support you to involve young people
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.
Case studies of EDI in research
Click here to read about the CAM-Pain Research Programme, led by Professor Kate Dunn. Researchers worked with children and young people, and their parents, to learn what happens when children with painful joints and muscles visit their doctor and parents think about their pain and clinic visits. They successfully included young people in all areas of the research cycle.
EDI in research video
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.
To address this, eight health charities, including Versus Arthritis came together to work with Egality Ltd., two community organisations, and eight people with lived experience to co-produce an awareness raising film.
Our collective aim is to increase the number of people with lived experience from diverse ethnic groups who are actively involved in health research and ultimately improve health treatments and services. The spoken word film focuses on why diversity in PPI and in health research matters for people, families, and communities.