About the programme
We know that research doesn't always take place where disease burden is highest. In some areas there may be high case numbers of a specific condition and few research studies available for people to take part in.
It is important that health and social care research enables opportunities for participation in the regions and communities with the greatest needs. That includes not only cities but also the coastal towns, rural and semi-rural areas where many older people live.
The goal of the programme is to ensure that research studies are delivered where the need is greatest. Our vision is for more inclusive ways of working at each stage of the research pathway.
This is emphasised within the Best Research for Best Health: The Next Chapter report.
By including more under-served groups in research, we can ensure that research meets the needs of the whole population.
The COVID-19 pandemic has highlighted the importance of making sure research studies are truly diverse. In our vaccine studies, we found that traditionally ‘under-served’ groups were reluctant to sign up and take part. We need to ensure that research studies are inclusive of all communities.
What is an ‘under-served’ community?
The programme has agreed this short description of an under-served community:
“A group that is less well represented in research than would be desirable from population prevalence and healthcare burden.”
We understand that the definition is context specific. It can depend on:
- the population
- the condition under study
- the question being asked by research teams
- the intervention being tested
Common characteristics are likely to include:
- lower inclusion in research than we would expect from population estimates
- high healthcare burden that is not matched by the volume of research designed for the group
- differences in how a group responds to, or engages with, healthcare interventions, with research failing to address these factors
This builds on the work completed by the NIHR INCLUDE project, which aims to make research more inclusive. Read more about the INCLUDE project and its guidance.
Our change initiatives
The programme has developed five change initiatives, under-pinned by clear communications. These aim to help everyone have equal opportunities to participate in research. With more inclusive participation in a wider range of research, everyone can benefit.
Geographic intelligence: Design and development of a research tool
Our research targeting tool is an online dashboard to help decide where research can best be placed. It can be used by researchers and those making funding decisions, to identify areas that are under-served by research.
The tool helps users to understand and locate these areas and populations.
To view and use the tool, contact the development team at email@example.com
INCLUDE - Resources, frameworks and knowledge of best practice
In 2017, NIHR commissioned a project to improve the inclusion of under-served groups in clinical research.
The INCLUDE project worked to develop different resources and guidance, such as:
- a roadmap with intervention points to improve inclusion at each part of the research pathway
- a framework of questions to guide funders, researchers and delivery teams as they design and assess clinical research proposals
- good practice examples and guidance for teams seeking to engage with under-served groups
Learn more about INCLUDE and access its resources on the INCLUDE project webpage or take part in the INCLUDE online training.
Funding criteria and performance management
The criteria and conditions set out in funding calls can sometimes create barriers for those applying. This is particularly relevant when seeking to make health and care research more inclusive. We are looking to frame funding calls to encourage the inclusion of under-served populations and remove any potential barriers.
Outputs and findings from this work will be published on this page by July 2022.
NIHR Funded workforce capability and geographic awards
Research funding is often awarded to the same small number of places and organisations. This means we don’t always have research expertise in areas where it is needed. For example, research into long-term conditions such as mental ill-health and diabetes indicates that recruitment is disproportionately low in areas with higher prevalence (Bower et al 2020).
To help address this, we promote and encourage training for people in less research-active areas of the UK, for example through a masters degree in research in our NIHR fellowship schemes.
We aim to develop a pipeline of researchers to build capacity in those areas where it is needed. In the longer term, this will start the journey to have research leaders of the future throughout the country to ensure equal access to research.
Learn more about the different NIHR fellowships that are available and key application dates.
Site Readiness to Support Research
We want to make sure that research delivered by individuals and organisations across the UK is equally accessible to everyone.
We know there are barriers which prevent people taking part in research studies. These can exist at different stages of the research process and at different levels across communities.
We have recently conducted an in-depth survey in this area and our findings will be available in May 2022.
Our aim for the end of the programme is to produce a series of recommendations and resources. These will support and encourage researchers to deliver studies in the areas of greatest need. We are also compiling examples of best practice and case studies.
If you have any case studies or examples of barriers that you have faced when delivering research in under-served communities, please contact us at EDI@nihr.ac.uk
Our video explains more about our programme and its initiatives: