People from diverse ethnic communities are, amongst others, disproportionately impacted by health inequalities in this country, and being underrepresented in health research is just one of many contributing factors behind this reality. A National Institute for Health and Care Research (NIHR) report and recent NHS good practice guide for engaging with underrepresented groups provide further context but it is clear that the lack of diversity in public involvement (e.g. helping to set the research question and co-design studies) and public participation (taking part in a study/trial) is preventing the benefits of research from reaching those often most in need.
Whilst the NIHR BioResource has made significant progress in diversifying our volunteer panel since launching over 15 years ago in Cambridge, including expansion to 18 BioResource Centres across England, there is still a long way to go.
What do we mean by 'underrepresented in research'? A 2023 guide from the NHS defines it as:
"The diversity of research participants should reflect the clinical or care community for whose benefit the research is taking place. When this is not the case, some groups are underrepresented."
NIHR BioResource - our commitment
The NIHR BioResource facilitates health research by providing researchers access to study participants, including their detailed genetic, clinical, and health and lifestyle data. This means we have a fundamental role in making sure our volunteer panel, currently more than 250,000 people, is an accurate representation of the population.
That's why we've partnered with Egality Health to help address these issues and focus on engaging and onboarding a new wave of volunteers from underrepresented groups. The project involves close collaboration with eight community organisations, focusing first on South Asian and Black communities in England, to help us address the barriers to participation, including a historical lack of engagement from the research sector.
Community organisations:
- Black Health Initiative (BHI)
- Caribbean and African Health Network (CAHN)
- Chronically Brown
- Connected Voice
- Rotherham Ethnic Minority Alliance (REMA)
- Research Black
- Social Action for Health
- South Asian Health Action
Workshops
In late February, Egality facilitated two workshops with the network to take a deep dive into the work of the NIHR BioResource: our history, objectives, materials we use to recruit new volunteers, our language, and more. The majority of time was held to explore the lived experiences of people from under-served communities, and the current barriers in the system and society which impact whether people will engage with health research. Themes identified included systemic mistrust, data handing, and lack of translated communications. We also discussed the benefits of joining the BioResource, where participants identified themes on community representation, being part of world-class discoveries, and above all improving the health prospects for their families and communities.
Communications campaign launch
On Tuesday 25th April, we launched the communications campaign to the public with release of this short video outlining the Why, Who and What behind the partnership. The campaign will continue for the next 12 weeks, featuring a wide range of content developed and distributed with our community partners to their networks. It is clear from the workshops and the breadth of literature on the topic that the messenger and message are equally important.
The Egality model is about working with community organisations as partners, co-producing communications that are authentic to their lived experience, and sharing information about the benefits of taking part in research through their networks, to reach those currently under-served by the research sector.
Volunteer for research today
Together we can make sure health research benefits those that need it most
Taking part
Joining the NIHR BioResource as a research volunteer involves donating a blood or saliva sample, completing health and lifestyle questionnaires and agreeing to provide access to medical records if they are required). New volunteers living near one of our BioResource Centres can provide a blood sample (only about 5% the volume required when someone donates blood to the NHS) or for those unable to visit us, a saliva sample can be provided using an at-home pack.
Anyone, any age, can take part in research via the NIHR BioResource. If you're interested, please fill out this short form or e-mail us on nbr@bioresource.nihr.ac.uk and our team will guide you through the sign-up process. Alternatively, call us on 0800 090 2233.
If you heard about us through one of the community organisations, please do let us know!
We're incredibly grateful to our partners for their contributions and together we're excited for the rest of the campaign and what it stands to achieve.
Keep an eye on our social channels (Twitter and LinkedIn) for more details and check out the community partners via their profiles too!