Involving people from diverse and under-represented groups
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There is increased evidence and understanding within primary health care and social care services that the needs and experience of specific patient groups are not being heard and met; the reasons are various and complex and beyond the scope of this Guidance. It is the same story for health research: specific groups, populations or communities are not included and are therefore ‘under-represented’ as participants and as public contributors.
The preferred terms for these groups are:
- Under-served or
You may also hear the following terms, but these are used less now:
- Hard to reach
- Seldom heard
Who are under-served groups?
The NIHR INCLUDE project, which was tasked to improve the inclusion of under-served groups in health research, says there is no single, simple definition for an under-served group.
The definition of ‘under-served’ is highly context-specific: it will depend on the population, the condition under study, the question being asked by research teams, and the intervention being tested. However, there are some key common characteristics:
- Lower inclusion in research than one would expect from population estimates
- High healthcare burden that is not matched by the volume of research designed for the group
- Important differences in how a group responds to, or engages with healthcare interventions compared to other groups, with research neglecting to address these factors
Examples of some under-served groups who may need extra support to take part are:
- Asylum seekers and refugees
- Black, Asian & minority ethnic groups
- Children and young people
- Family carers, especially young carers and older carers
- Gypsies and travellers
- lesbian, gay, bisexual & transgender, people
- People from lower socioeconomic backgrounds
- People in rural communities
- People living in poverty
- People of working age
- People with disabilities – physical and cognitive
- People with experience of homelessness
- People with substance misuse issues
Why people from under-served communities need to be included
Funders including NIHR, UKRI and Wellcome want to see positive action taken by health researchers to support and promote the involvement of under-served communities, so that the broadest possible range of people contribute to PPI.
The profile of those who usually get involved tends to be white, middle-class, retired, some of whom have a health or research background – they are over-represented. Consequently, the knowledge, experiences and opinions of many groups who could contribute to health research, are not heard. This matters because these under-served groups are often the ones most affected by health conditions being researched.
It is important to note that PPI is not about having a representative sample, but about bringing different perspectives and improving research by making it more accessible and relevant to the population it is intended to benefit.
At least part of the answer lies in greater equality, diversity and inclusion (EDI) in PPI.
- Equality is about the fair treatment of everybody and, for example, ensuring everybody has an equal opportunity and is not treated differently or discriminated against because of their characteristics. Some characteristics are, protected by law in the Equality Act 2010. See Equality and Human Rights Commission for details
- Diversity is about the mix of people, taking account of the differences between people and groups of people, and placing a positive value on those differences
- Inclusion is about the culture in which the mix of people can take part and join in and be valued for being themselves
Find out more:
How to include under-served groups
Including a more diverse range of people to become PPI contributors means that researchers need to:
- Understand the barriers to PPI that these groups experience
- Make targeted efforts to find and engage with them
- Build relationships
- Create solutions for inclusion of under-served groups in a context-specific way
Barrier: Unaware of opportunities for involvement and how valuable their experience is
Solution: Hold engagement events and build relationships with the community
- Be specific to the Community i.e. Caribbean, African, South Asian
- Get the communities involved with tasks i.e. cooking, invitations
- Hold events at familiar, supportive community venues
- Get a health professional to speak on the topics e.g. Diabetes
Barrier: Adverts haven’t reached them
Solution: It’s easier to go through existing community leaders
- Outreach health workers or support group co-ordinators who are often the ‘gate keepers’ to communities and trusted figures
- Be proactive and build a wider network of community contacts that can then help you reach the most vulnerable and underserved communities
Barrier: Lack of time – the requirements are too time consuming
Solution: Start building up relationships with the communities before you submit your research application
- Speak to members of a specific community, outreach workers and people with experience of the community before putting together your PPI for research application
- You need to understand what will need to be in place to meaningfully involve contributors in a research study
- This work should be started as early as possible to start building up partnerships with the community
Barrier: Additional costs of parking, travel, childcare, and lost work time to attend meetings
- Make sure that you have been in touch with people well in advance of an event to ask about specific requirements
- Do they need help with transport?
- Can they only attend at specific times?
- Offer financial reimbursement such as paying for childcare or a carer’s time
Barrier: Lack of confidence – researchers seem to know it all and have the power in the room
Solution: Build relationships from “common interests” and use this to create conversations and develop shared understanding
- Use active listening skills to ensure you get the correct feedback and views from your groups
- Meet with people where they are comfortable, such as their community centres, schools and church – neutral territory
- Show your contributors how their feedback and suggestions have made a difference in your research and how you have acted on it
Barrier: Lower levels of literacy and numeracy than the researchers so they can’t access the materials they need to read
Solution: Easy read formats for all communication, plain English and short sentences
- Try to avoid leaving heavily worded leaflets
- When and where possible use alternative formats such as DVDs, audio and visual cues e.g. waving a green object when you want to speak
Barrier: Unable to travel to meetings on public transport perhaps due to a disability
Solution: Understand your contributor’s needs before you invite them to a meeting
- Be organised and arrange how you can support your contributors to attend meetings and involvement activities
- This should be considered at the research application stage
- Ask them how they want to be included e.g. would they prefer to virtually attend some meetings but occasionally attend face-to-face
Barrier: Poor communication about the research and lack of time given to help contributors understand their role or research methods and terminology
Solution: Understand the background of the groups you are trying to involve
- For example, will you need translators if the specific group don’t speak English as a first language? Or are there low levels of literacy in the community?
- Think about this at the time of putting together your research application
- This should form the basis of thinking through what PPI will be needed for a project so appropriate time and budgeting can be accounted for
Barrier: Meeting times in standard office hours may exclude some people who work
Solution: Ask what will be the best times for your PPI contributors to be involved?
- Consider holding some meetings outside of standard office hours
- Catch up with PPI contributors in advance to ask for their feedback before a meeting and arrange to brief them about a meeting afterwards at a time to suit them
- Have options to join a meeting digitally which may be possible for some contributors during a working day
Barrier: Lack of resources to support PPI, including researcher time and an adequate budget
Solution: Your PPI is an essential part of your research proposal or funding bid!
- Planning your PPI is as essential to your research bid as thinking about statistics or methodology
- Speak to appropriate people at the time of putting the bid together such as, key community contacts, PPI professionals and importantly the specific patient or community groups
- Ask what will be important to be able to do the PPI well, and factor the time and budget needed to do this work as part of the application
Barrier: Researchers seem unapproachable
Solution: Trust, communication and flexibility
- Be respectful of cultural practices and ask the community how they wish to be involved – don’t make assumptions
- Continuity of contact – try to have a main point of contact for your contributors
- Speak in plain language and check understanding. Make information enjoyable and engaging
Barrier: Using terminology that does not feel right for the communities being engaged
Solution: Don’t be afraid to ask the community how they want to be described
- Members of a particular community will not expect you to know all about their specific cultural practices, but it is respectful to ask them how they wish to be described
- Use interpreters and members of the community with whom you already have a relationship to understand the clearest terminology to use
Adapted from PPI useful documents.
Find out more about how to include people from under-served communities:
- INCLUDE Guidance (General): National Institute for Health and Care Research (2020) Improving inclusion of under-served groups in clinical research: Guidance from the NIHR INCLUDE project. UK: National Institute for Health Research
- INCLUDE Guidance (COVID-19 specific): National Institute for Health and Care Research (2020) Ensuring that COVID-19 Research is Inclusive: Guidance from the NIHR CRN INCLUDE project. UK: National Institute for Health Research
- A philosopher’s approach to equality Dr Sapfo Lignou, Department of Psychiatry, University of Oxford
- Videos: Patient and Public Involvement – NIHR Oxford Biomedical Research Centre
- East Midlands AHSN Guides to involving specific, under-represented groups