Diversity and inclusivity in the NIHR BioResource

John Bradley, Helena Hornsby, Neil Walker, Gerome Breen, NIHR BioResource


National Institute for Health Research

The National Institute for Health Research (NIHR) is actively and openly supporting and promoting equality, diversity and inclusion in research by extending its reach to include communities where research will make the biggest difference, and involving a broad range of patients, public and carers at every step. The NIHR BioResource is committed to achieving this goal, which is embedded in its strategy.


NIHR BioResource

The NIHR BioResource is a recallable resource of over 200,000 volunteers from the general population, and patients with rare and common diseases. Participants provide information about their health and lifestyle, together with biological samples, including DNA, and consent to be contacted about clinical research studies according to their phenotype or genotype. The BioResource is one of four key infrastructures supporting population level genomic projects in the Life Science Industrial Strategy.


The BioResource was established in Cambridge in 2010, and was expanded to include 8 centres in 2012. By 2017 the BioResource was coordinated by 13 centres across England. This increased national reach is illustrated by these cartograms, which distort the geography to reflect the density of the BioResource participants.



Cartogtrams show the evolution of the BioResource over the last decade.


Studying diseases with major health burdens

Expansion allowed the BioResource to become a truly national resource; the BioResource now recruits from 120 NHS sites, prioritising diseases of major health impact where there is capacity to undertake translational research, potential to use genomics and in depth phenotyping to develop precision medicine interventions, and scope for partnerships with industry and other stakeholders.



Expansion of the BioResource across England has allowed recruitment across a range of common and rare diseases.


Engaging with local communities

The national reach and breadth of diseases has allowed the BioResource to increase inclusivity and diversity, illustrated here by this map showing how the BioResource covers the full spectrum of deprivation, with areas with the most deprived participants shown in red, in coastal regions and some urban areas, including South East London.


BioResource recruitment sites cover areas of deprivation.

Harnessing social media

The NIHR Mental Health BioResource and Genetic Links to Anxiety and Depression (GLAD) study was launched with a social media campaign in 2018, and has already exceeded recruitment targets. On line recruitment has supported high rates in relatively more deprived and lower income areas of the UK, and focused media and NHS recruitment campaigns has promoted diversity. More than 28% of recruitment is from LGBTQIA groups, and >90% of participants have very severe depression and anxiety.



Online recruitment to the NIHR Mental Health BioResource reaches remote and deprived areas. The correlation of recruitment per postcode region and the index of multiple deprivation is 0.24 (p<10-5).


Next steps

These approaches have also allowed recruitment of an ethnically diverse population, driven in part by geography but also by study recruitment. For example, the relatively high proportion of black participants in Cambridge does not reflect the diversity of the local population, and is likely to reflect recruitment to a study of black patients with hypertension.



Ethnic diversity of BioResource participants.

However, ethnic minorities remain underrepresented. In the NIHR Mental Health BioResource and GLAD study only 7.3% identify as being from a minority ethnic group, representing approximately half their proportion in the general population. To address this we are working with diverse communities to co-design materials with and for each minority ethnic group, and targeting areas with high numbers of minority ethnic group residents and the diseases with a high health burden in different ethnic groups. This include a specific initiative in South East London to recruit volunteers with African or African-Caribbean ancestry.



 

John Bradley is a consultant physician and nephrologist at Cambridge University Hospitals, and honorary Professor of Experimental Medicine at University of Cambridge. He completed undergraduate medical training in Nottingham and trained in renal medicine in Cambridge, before undertaking research fellowships at Harvard, Yale and Cambridge Universities. He is Director of Research for Cambridge University Health Partners, Chief Investigator of the NIHR BioResource, and Director of the Gut Reaction Health Data Research UK Data Research Hub.