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Involving people from under-served populations
Defining under-served groups within your area of work
The term under-served groups reflect the perspective that the research community needs to provide a better service for people in particular groups. Some key characteristics that are common to several under-served groups are:
Lower inclusion in research than one would expect from a population estimate
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
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. No single, simple definition can encompass all under-served groups. You can read more about the groups under-served by research on the NIHR website.
Identifying who to involve
You will need to consider who is under-served within your area of work and why you would like to hear from this group. Some prompts for you to consider are:
Which groups do you want to recruit members of the public from and why? (e.g. are there groups particularly affected by this area of health who are not currently heard from?)
How many people do you need to recruit?
What links or connections do you or partner organisations already have? (e.g. NHS Trusts, Local Authorities, Healthwatch, Charities)
You will need to consider who are your audience, where are they and who are they are already linked to. Some useful tools for you to use are provided below:
There are a range of data tools available from Public Health England and The Office for Health Improvement and Disparities.
Local health data resources (e.g. the JSNA, health data sets, Local authority public health teams)
Local Authorities often have their own data sets on their websites
If you cannot easily explain why you want a specific group of individuals to take part, then you should reconsider your recruitment plan.
Values underpinning work with people and communities
When working with people and communities, it is essential that the relationship you develop is built on mutual benefit, active listening, cooperation, and trust. When planning how you will engage under-served it is important to consider the ethics and values that underpin your work
The Community Development Standards is an excellent framework for considering how to approach the practice of community engagement.
The Institute for Youth Work Code of Ethics provides a clear ethical framework to reflect upon when working with young people.
Recruitment methods
As under-served groups by definition are less likely to engage with NIHR, you will need to consider your approach to recruitment.
We often need to engage with or seek out new partnerships with groups and organisations that already have established connections. This approach to recruitment will increase the likelihood of recruiting a greater diversity of participants and a more 'general public' viewpoint. Here are some tips for engaging with communities through partner organisations:
Build in time to be present in the community and build relationships with local organisations, charities or condition-based groups is key. Going along to events and meeting organisations for coffee can go a long way to building trust.
Organisations working at the ‘coal face’ in communities are often under-resourced, rely on volunteer support, and have lots of demands on their time. They may rely on project-based funding to fund staff hours on pieces of work. Build in financial support to your involvement budget, to cover the costs of involvement to any partner organisations (e.g. staff time, cost of venue use for community events). Partner organisations may also appreciate in-kind support.
It may help to do non-research-focused activities first that respond to interests and needs within the community, for example, free information sessions on the research topic you are focused on (e.g. diabetes) and where to go for health information/support, before talking about involvement/recruitment in research. This will help to introduce research as a relevant issue to people’s lives and things they care about, and will also provide an immediate benefit to the local community.
Your partners will have a good understanding of appropriate and effective recruitment methods and opportunities. Work with them to design and implement these.
Engagement methods
There are several different ways to engage or involve people in your activity. Please see Not Another Consultation for ideas on how you could facilitate your engagement activities with under-served communities. When working with partner organisations with established relationships with communities ask for advice about the best method to engage with your community and anything you should consider in your planning.
You can also see the Public Involvement Checklists for more traditional models of public involvement.
Guidance on involving unpaid carers in research
You can find helpful guidance about involving unpaid carers by referring to the following: top tips for researchers involving carers in their work and top tips for carers who are considering becoming involved.
Payment
Please refer to the payment section for guidance on how to plan and organise payments for public partners.
If you are working with another organisation to engage with people they work with, discuss their policies and procedures for payment when planning the activity. You will need to agree on who will organise this and if there are considerations for the community you will be working with to take into account (e.g. people who do not have bank accounts, or people in receipt of welfare benefits).
Communication, thanks, and feedback
When involving people please consider the following:
How you will communicate how you/ your organisation have acted on their feedback and contributions;
How you will thank people for their involvement and recognise their contributions;
The format you will use to get feedback from the group you have engaged with about their experience of the process;
How you would do things differently as a result of any feedback you gain;
How you will sustain the relationship with the organisation and ensure the opportunities you provide are mutually beneficial.
Accessibility and Inclusion
You will need to consider if public partners need any additional support or have any accessibility needs to allow them to contribute or attend an activity. We have provided a few template examples and information below to assist you in your planning.
A practical checklist for public engagement activities (UCL - content not managed by NIHR)
Genomics England plain language guide and descriptors
Generation R and European YPAG Network joint toolkit for young people's advisory groups, a guide to co-producing peer research with young people
How to run accessible, inclusive hybrid events using Zoom, Teams and more
Being inclusive in public involvement in health and care research (NIHR guidance )
Also, consider if you might need translation or interpretation as part of your planning for participants.
Resources
Some useful resources are provided below:
NIHR Toolkit - Increasing participation of Black Asian and Minority Ethnic (BAME) groups in health and social care research;
Good Things Foundation report on Digital Inclusion in Health and Care (2020);
Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project;
Research Ready Communities is a programme managed by the LCRN PPI Leads which works with public partners to raise awareness of research within their community.
Local Government Association Improvement and Development Agency. A glass half-full: How an asset approach can improve community health and well-being.
Community Places. Community planning toolkit.
Involve and Local Government Association Improvement and Development Agency. Not Another Consultation! Making community engagement informal and fun.
Nurture Development. Asset-Based Community Development.
NIHR is developing the Research Ready Communities toolkit into a practical resource that wider NIHR staff can use to plan and effectively engage with under-served groups in research. This will be available later in the year.
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