The Health Research Authority (HRA) and the Medicine and Healthcare products Regulatory Agency (MHRA) are committed to enabling the highest quality health and social care research which can benefit the whole UK population.
We are working together to help researchers increase the diversity of people taking part in research in the UK and we will set out our expectations in future guidance.
Diversity of participants from a broad range of backgrounds is crucial to ensure results of health and social care research are more widely applicable and meet the needs of the whole population.
Why is this important?
The UK population is made up of a wide range of communities, groups, and individuals from different backgrounds. To ensure that the whole population can benefit from research, there needs to be an understanding of how interventions work on different groups of people. Including a range of people in research provides an understanding of the safety of drugs, devices and information about an illness or condition across different groups.
All members of the research team should consider how they can ensure that those who have the potential to benefit from the research, including people from under-served groups, are given the opportunity to take part. Involving people who the research is for and about in the design stage, will help ensure that the research is more inclusive.
Health and social care research should be done with and for everyone. This is a guiding principle of the HRA’s strategy.
What we are doing
- work is underway to develop joint guidance to help researchers to increase diversity of participants in clinical research. This is part of our work with the Recovery, Resilience and Growth (RRG) of UK clinical research programme
- we have made a Shared Commitment to Public Involvement in health and social care research and are now working with all of the partners to embed excellent public involvement, which has been shown to improve the quality of health and social care research. The commitment explicitly states that we will work together to support improvements in equality, diversity and inclusion in public involvement and we will work together and share best practice
- supporting Research Ethics Committees to be clear about what they expect researchers to do so that they can assess whether researchers have done enough to increase the diversity of people taking part
- clarifying our expectations of researchers by updating the UK Policy Framework for Health and Social Care Research regarding diversity
We will provide an update on the progress on each of these actions.
The following resources provide further information and good practice on diversity in research, as well as tools to support researchers.
This is not an exhaustive list of resources available, but is intended to be a starting point for researchers to understand the important role they have in increasing diversity in research.
The UK Standards for Public Involvement are designed to improve the quality and consistency of public involvement in research. They give a description of what good public involvement looks like, providing guidance and reassurance for users working towards achieving their own best practice.
The webpage also provides resources with examples of how the standards have been put into practice, and resources to support working towards the UK Standards.
Our public involvement best practice principles set out expectations for researchers as to how best to involve people with lived experience at all stages of the research cycle.
This report was produced by Egality, a start-up focused on improving diversity in health research and clinical trials. The report includes recommendations and resources for national bodies, organisations and individuals.
Expectations grouped around six themes and accompanied by resources including toolkits, articles and webinars, and examples of grants, policies and practices already in use.
This website provides tools and resources to help make research evidence more relevant for action to reduce social and health inequalities.
Advice and guidance on health needs for migrant patients for healthcare practitioners, including meeting patients’ communication needs in languages other than English.
This document from the Patient-Cantered Outcomes Research Institute provides a set of guiding principles for placing diversity, equity and inclusion at the centre of health research partnerships.
This document by Cochrane outlines a Six-Step Engagement Framework to support research groups with stakeholder engagement, regardless of previous experience.
Wellcome Trust have developed this resource for researchers to support planning public engagement.
This gov.uk webpage acts as a resource on how to write about ethnicity, including words and phrases, to be inclusive.
The Integrated Research Application System (IRAS) is a single system for applying for the permissions and approvals for health, social and community care research in the UK.
NIHR-INCLUDE was commissioned by the National Institute for Health and Care Research (NIHR) Clinical Research Network's (CRN) to address the lack of representation in health and care research.
They have developed NIHR improving inclusion of under-served groups in health and care research: guidance from the NIHR-INCLUDE project. This guidance summarises what an under-served group is, examples of under-served groups and barriers to inclusion. It also provides a suggested framework of questions to guide funders, researchers and delivery teams as they design and assess health and care research proposals.
The website also contains a range of tools and resources to support delivering research and to act as examples of good practice. There is also more information available on NIHR's under-served communities programme of work.
This framework, co-produced by NIHR and Care Research’s Race Equality Public Action Group (REPAG), is a tool to help organisations deliver the change needed to address inequities in health and care research.
The INCLUDE project has also developed a series of frameworks to help research teams think about how they might make it easier or more difficult for some people to take part. These frameworks aim to help research teams think carefully about which groups should be included in their research for its results to be widely applicable, and what challenges there may be to making this possible.
- The INCLUDE Ethnicity Framework
- The INCLUDE Impaired Capacity to Consent Framework
- The INCLUDE Socioeconomic Disadvantage Framework
This NIHR toolkit consists of comprehensive training, useful resources, and guidance to improve equality analysis, practice and outcomes.
Highlights work being done by NIHR partners for south east of England to explore the barriers to ethnic minority group involvement in research and links to the report Reaching Out: Building relationships to increase research impact.
The NIHR Research Design Service Equality Diversity and Inclusion (EDI) Toolkit resource has been developed to support researchers to better understand how to embed EDI in research design and to meet NIHR’s EDI requirements.
- NHS Accelerated Access Collaborative - Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups
This document provides practical insight for researchers on how to engage more diverse participants in health research.