PSP095: NIHR RDN Primary Care Programme funding to support Under-served communities in research Guidance

The RDN recommends that regional networks allocate funding on expanding health and care research participation opportunities to under-served regions and communities with major health needs. Whilst there is no agreed definition of what constitutes an under-served community, as noted in the NIHR INCLUDE Guidance these tend to be those where there is lower inclusion in research than might be expected from population  estimates or where there is a higher healthcare burden that is not matched by the volume of research designed for the group. Allocation of this funding reflects the need to provide equitable access to research opportunities for under-served communities as a collective national priority enabled at a local level across all the regional networks. This expansion is a key component of Best Research for Best Health: The Next Chapter and includes targeting areas of high prevalence/incidence which the CRN previously included in the LCRN funding model as 'Targeting Health Needs'. 

Under the coordination of the RDN People and Inclusion team in partnership with the NIHR Corporate Research Inclusion team and RDN Public Engagement function, RRDNs are asked to identify solutions that will provide equitable access to research opportunities for the under-served communities, and those with major health needs, in their regions and meet the overarching national outputs of:

• Improved equitable access to research sponsored by the Life Sciences industry.

• Increased number of Participant Identification Centres (PICs) within community-based settings, and an understanding of whether a pre-aware plan and place service will provide greater access to research.

• Development of research awareness and participation opportunities in under-served regions and communities, and an understanding of whether Local Authority based researchers will increase the research culture.

• Understanding how the  RDN Primary Care Strategy / NIHR RDN Primary Care Programme can support research in this area

• Increased research-readiness amongst under-served populations through the Research Ready Communities scheme and NHSE Research Engagement Networks (REN) programmes delivered jointly with RRDN teams, and initiatives such as Be Part of Research and Join Dementia Research.

Enabling the national progression of our overall approach to improving inclusive access to research opportunities will require local approaches in conjunction with greater collaboration across the RRDNs to enable development, best practice and solution sharing. This collaborative sharing approach is now also in place across the NIHR Centres through the NIHR Under-served Communities Programme.

• Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project

• Multiple long-term conditions research

• NIHR Research Inclusion Strategy 2022 - 2027

• NIHR Research Inclusion Strategy 2022-2027 action plan

• NIHR Research Ready Communities

The allocation and implementation of this fiscal resource is likely to fall into two categories:

• Supporting national programmes driving forwards improving inclusion of under-served groups in research

• Design and delivery of local solutions against regional priorities relating to under-served groups, particularly as this relates to research recruitment and participation.

In turn, it is anticipated that these are likely, but not exclusively, to align with the following areas of focus:

• Identifying target under-served communities using local information

• Supporting patient and site identification associated with these under-served communities

• Building on previous work to understand the barriers associated with increasing awareness of and supporting under-served communities to participate in research, focus now needs to shift to working to improve access for under-served communities

• Aligning the established Research Ready Communities work with existing and future underserved work, including collaborative working with national and regional initiatives to better enable the recruitment of research participants from under-served communities (e.g. NHSE REN programmes)

• Competency development and training relating to supporting under-served communities to access and participate in research as an organisational aspiration and underpinning culture

• Capacity development to enable delivery approaches to align with our focus on supporting involvement of under-served communities in research

• Development of information and digital programmes to support better understanding, accessibility needs and reporting on under-served communities

• Increased working with established community settings and Integrated Care Systems that could further enable reaching under-served communities and help in developing new opportunities for a community-based workforce.

As an overarching principle, activities and initiatives that are aimed at expanding awareness and participation opportunities for under-served regions and communities with major health needs to access and participate in health and care research should be considered as appropriate use of this resource.

Reporting of activities and initiatives supported and undertaken, and resources dedicated to support the involvement of under-served communities in research should be reported via the RDN Under-served Funding App Sheet.  RRDN representation on the National RDN Research Inclusion Working Group is required to enable the sharing of lessons learned and best practice. 

It is noted that the recommendation within previous versions of the Performance and Operating Framework (POF) was for LCRNs to allocate at least 2% of their funding to support under-served communities.  RRDNs are permitted to provide funding for under-served communities in the latter six months of 2024/25 if this has been agreed, and only to the amount agreed, between the former LCRN Host Organisation and the Delivery organisation.

RRDNs should work collaboratively with key partners across their region including with NHSE RENs, Integrated Care Systems and Boards (ICS/ICB) and Voluntary, Community and Social Enterprise (VSCE) groups, organisations and patient-led groups, and ensure alignment with relevant NIHR Public Partnerships and RDN initiatives. including Research Ready ommunities and Public Research Champions. Activities shouls also closely align with national policies and priorities, and with the NIHR Research Inclusion Strategy. Greater focus should be given to recording, demonstrating and reporting the impact of initiatives directed at supporting the involvement of under-served communities in research.  

Examples of activities and initiatives supported by this resource to date can be found on the RDN Under-served Funding App Sheet and are summarised in the following report: LCRN Impact of 2% under-served funding report.

This guidance will be updated following the next phase of RDN service design.

CRN: Clinical Research Network

ICB: Integrated Care Boards

ICS: Integrated Care Systems

INCLUDE: Improving inclusion of under-served groups in clinical research  

JDR: Join Dementia Research

LCRN: Local Clinical Research Network

MLTC: Multiple Long Term Conditions 

PICs: Participant Identification Centres

POF: Performance and Operating Framework

PPIE: Patient and Public Involvement and Engagement

PSP: POF Support Page

NHSE REN: NHS England Research Engagement Networks 

RDN: Research Delivery Network

RRDN: Regional Research Delivery Networks

VSCE: Voluntary, Community and Social Enterprise

Version number: 3.0 

Effective from date: 1 October 2024

For further information please contact the RDN People and Inclusion Team

rdnccpeople-inclusion@nihr.ac.uk