Inclusive Research Framework

The NIHR BioResource wants to include everyone, especially those who are disproportionately impacted by health inequalities such as; minority ethnic groups, LGBTQ+ communities, individuals living with physical and cognitive disabilities, and the socio-economically disadvantaged. This is crucial as the BioResource is committed to bringing together researchers and volunteers to contribute to leading health research that will benefit everyone. See the Egality section below for more on this crucial work. 

We acknowledge that past discrimination and current implicit biases (negative attitudes, of which one is not consciously aware, against a specific social group) lead to inequities related to race, gender, ethnicity, sexual orientation, and disability still exist in healthcare and research settings. We therefore aim to use language that is centred around the benefit to the individual and the community and refrain from challenging the validity of past and current lived experiences.

We aim to regularly engage with members of the public and diverse communities, building mutually beneficial relationships. This means:

• Including people with lived experience in policy and strategic decisions made at the BioResource
• Partnering with community organisations to better involve and engage diverse PEOPLE in our research
• Making sure that we have public representation on our steering groups, National Participant Advisory Group (NPAG) and our research application reviews, so that everyone’s voice is heard in health research.

The BioResource is committed to understanding the changes, benefits and learnings gained from the insights and experiences of members of the public. Established in 2022, our National Participant Advisory Group aims to give voice to the more than 290,000 BioResource volunteers from across the UK by providing input on operational and strategic matters at BioResource from a public and volunteer perspective. Importantly, the NPAG reviews and gives recommendations on all study applications from researchers seeking to use BioResource data and/or samples or the recall of volunteers upon request for their work.

A critical element of this review process is checking that researchers have themselves included PPI (patient and public involvement) in their study. Applicants must demonstrate their consideration of EDI and PPI in their applications in order to utilise the data and samples that BioResource is the custodian of, and ensure that the research will indeed benefit the people it is involving. This practice sets the expectation that research studies are enhanced by good practice in consideration of EDI and PPI.

Our NPAG members also periodically review and give feedback on volunteer-facing materials such as recruitment flyers, consent forms, and others. They represent all cohorts of the BioResource from across the UK, from a variety of backgrounds and health conditions, and champion the opinions and interests of volunteers in the NIHR BioResource.

Since 2023, the BioResource has partnered with the community engagement agency Egality Health to actively improve our inclusion and representation of people from diverse ethnic groups in health research. This work has focused on better serving and representing members of the South Asian and Black community, who have been historically and disproportionately impacted by health inequalities in the UK. To do so, the BioResource and Egality Health collaborate with eight community organisations from across the UK:

• Black Health Initiative (BHI), Leeds
• Caribbean & African Health Network (CAHN), Manchester
• Chronically Brown, Birmingham
• Connected Voice, Newcastle
• Research Black, London
• Rotherham Ethnic Minority Alliance (REMA), Rotherham
• Social Action for Health (SAfH), London
• South Asian Health Action (SAHA), Leicester

In a series of workshops held with representatives from these community organisations we aimed to investigate the work of the NIHR BioResource, including our history, objectives, materials we use to recruit new volunteers, our language, and more. Key themes identified from these discussions included systemic mistrust, data handling, and lack of translated communications. These insights were then used as building blocks to co-create materials tailored to be more inclusive and accessible to people from underrepresented communities.

Health inequalities experienced by Black people in the UK are undeniable. To address this and ensure that health research and outcomes benefit everyone, the BioResource, in partnership with Kings College London and Genomics England, established the Improving Black Health Outcomes (IBHO) initiative. IBHO aims to recruit at least 5,000 individuals from Black ethnic backgrounds living in the UK, for research into health conditions that disproportionately affect them such as sickle cell anaemia and kidney disease.

From the inception of the IBHO BioResource, with its roots in South London, the project team worked with community groups and individuals from Black communities to co-create the programmes' research protocol. With our partners, we carried out extensive patient and public involvement with individuals from Black communities in the UK to develop the programme's research protocol, information sheets, volunteer questionnaires and promotional materials. We will continue working with Black-led organisations to ensure the IBHO BioResource is co-delivered with and for the Black communities it serves to benefit. 

Example from IBHO Questionnaire:

“Health research studies have rarely focused on the specific health needs and experiences of people from black communities… People from black communities have often not benefitted from advances in health research”

The DNA, Children + Young People’s Health Resource is a pioneering initiative to study a variety of diseases and health conditions in children aged 0-15.  Many diseases develop in childhood, yet health research is often only carried out in adults. D-CYPHR wants to change this by studying factors related to the genetics and environment of young people aged 0 – 15, and contribute to the development of pioneering new treatments and better care for children and the adults they will become.

D-CYPHR is a health programme made with and for children and young people. They are an underrepresented group that have historically been denied a voice in health research. To address these inequalities, in collaboration with leading mental health charity for children and young people, Anna Freud, we created the D-CYPHR Ambassador programme. The Ambassadors are a group made up of young people and parents who contribute ideas and lived experience insight to help shape D-CYPHR. Some of their key activities include: 

• Co-creating marketing materials 

• Ensuring resources reflect their views 

• Expressing themselves through ongoing training and social events 

• Meeting with D-CYPHR colleagues regularly to discuss the programme and plan next steps 

• Presenting their work to senior decision makers and receive feedback on its impact.

We also work with a range of Young Persons Advisory Groups (YPAGs), and community organisations representing a range of ethnic groups from across the UK to ensure that this new health resource will give a voice to young people across the country and include them in the development of treatments that benefit everyone.

As well as involving young people, it's important that our participants and Ambassadors represent the diversity of the UK population. We are working with different community organisations through our partner Egality to improve representation in D-CYPHR from diverse ethnic groups.

The NIHR BioResource for Mental Health focuses on recruiting participants experiencing mental health conditions and has recruited over 40,000 participants to date. The programme consists of two key studies:

1. Genetic Links to Anxiety and Depression (GLAD): GLAD is the largest anxiety and depression project ever undertaken in the UK, set up to better understand the genetic data and health outcomes of people living with anxiety and depression.
2. Eating Disorders Genetics Initiative (EDGI): EDGI is a study collecting the psychological, genetic and medical information of people with experience of any eating disorder.

Both studies have been co-designed by people living with mental health conditions. People with mental health conditions are classified by the NIHR as an under-served group, with people from minority ethnic communities at a comparatively higher risk of suffering a mental health condition. To ensure these studies are informed by the voices and experiences of these populations, our partner King’s College London set up two PPIE groups in 2023: A group of 1,000 people with lived experience of anxiety and depression to inform the GLAD study, and a group of a few hundred people with experience of an eating disorder to inform the EDGI study. These patient groups meet every few months to co-design research conducted by the Mental Health BioResource.

The NIHR BioResource has recruited over 24,000 people with Rare Diseases to understand more about the genetic causes of over 60 Rare Diseases. From 2013-2018, we conducted a Whole Genome Sequencing study that sequenced the DNA of around 8,000 participants with Rare Diseases and their family members. As a result, we were able to provide a genetic diagnosis to on average 10-20% of the participating Rare Disease patients, which depended on the current research knowledge of that rare disease. This resulted in some patients' treatment being adjusted whereas others found comfort in finally having a diagnosis. Following on from this study, the Rare Diseases BioResource has recently started an RNA phenotyping project. The overarching aim is to give us a greater understanding of how and why rare diseases might occur. We hope that by carrying out this research, the road to diagnosis will become shorter with more treatment options. 

Between 2022-2023 the NIHR BioResource worked with inclusive marketing agency Purple Goat and members of the disabled community to ensure that our onboarding documentation, communications and promotional materials are accessible to everyone, including people with disabilities.

We also created an Accessible Materials working group to remove language and sensory barriers to make the BioResource more accessible to everyone. 

Find out more information about our work to improve accessibility to health research.