EDI case studies

Childhood outcomes in children with Hirschsprung disease: a population-based data linkage study in England

Research Lead: Conor McCann, Katie Harron

Theme: Tissue Engineering and Regenerative Medicine, NIHR GOSH BRC

Hirschsprung disease (HD) is a rare condition affecting around 1 in 5,000 children. Although surgery in infancy is life-saving, many children experience ongoing health, educational and psychosocial challenges. Historically, research into HD has relied on small, single-centre studies, limiting understanding of long-term outcomes and excluding many families from participation.

To address this, Conor McCann and colleagues worked with the ECHILD programme to analyse linked national health, education and mortality data for more than 11 million children born in England. This population-level approach enabled inclusion of all children with HD identified in NHS-funded hospitals, regardless of ethnicity, socioeconomic background, location, language or ability to participate in traditional research studies.

EDI was central to the project from the outset. Researchers examined outcomes by sex, ethnicity and deprivation, rather than treating the HD population as a single group. This approach identified important inequalities, including evidence that girls with HD were disproportionately affected by Special Educational Needs and Disabilities (SEND) compared with boys.

The research was also shaped by the Hirschsprung Connect Focus Group, a BRC-funded patient and family group. Families highlighted issues often overlooked in medical research, including mental health, school attendance, bullying, fertility concerns, sibling impact and the quality of information provided at diagnosis. These priorities directly influenced both the published study and the follow-on NIHR-funded SHARE HD programme.

The study provided the first national evidence demonstrating that children with HD experience higher rates of hospital admissions, surgical interventions, mortality and SEND compared with their peers. The findings are helping build the case for more equitable and multidisciplinary support for children and families living with HD.

The work has also secured funding for the SHARE HD programme (2026–2028), which will further investigate inequalities in health and educational outcomes and support the NIHR priority of tackling health inequalities through early intervention.

This project demonstrates how inclusive research can be achieved through a combination of population-level data, meaningful patient involvement and a commitment to identifying and addressing inequalities. By ensuring that under-represented voices shape both the questions asked and the outcomes measured, the team has produced evidence that is more relevant, equitable and impactful for the HD community.

• Using national linked datasets as an inclusion strategy, reaching groups often excluded from clinic-based research.
• Involving patients and families in setting research priorities, not just reviewing study plans.
• Embedding lived-experience representatives within project governance and decision-making.
• Developing accessible, non-stigmatising language and dissemination materials alongside patient groups.
• Ensuring findings are shared through open-access publications, plain English summaries and community events.

Exploring Black Families’ Experiences of Prenatal Genetic Testing in the NHS

Research Lead: Dr Michelle Peter
Theme: Genomic Medicine

Black women and birthing people experience persistent inequalities in maternity care, yet their perspectives are often underrepresented in prenatal genetic and genomic research. Dr Michelle Peter’s fellowship research explored the experiences of Black parents who were offered prenatal genetic testing in England, with the aim of identifying how NHS services can deliver more equitable and inclusive care. The project included a clinical audit, literature review, qualitative interviews with Black women and healthcare professionals, and a survey examining knowledge, attitudes and trust in prenatal testing and healthcare.

Equality, diversity and inclusion were at the heart of the project. Rather than focusing solely on uptake of prenatal testing, the research explored wider issues such as trust, communication, informed choice and representation within healthcare and research. The study was designed specifically to amplify the voices of Black families and ensure their experiences informed future service development.

Patient and Public Involvement (PPI) was embedded from the earliest stages. A dedicated PPI group, including Black parents, a genetic counsellor and representatives from Black parent organisations, helped shape recruitment strategies, study materials, interpretation of findings and dissemination activities. PPI contributors were recognised as research partners and included as co-authors on publications arising from the work.

The project prioritised trustworthiness through sustained engagement with Black-led community organisations and ongoing communication with participants. Interviews were designed to be flexible and accessible, including remote participation options and pre-interview conversations to build rapport and answer questions. This approach helped ensure participants felt valued, informed and comfortable sharing their experiences.

This is the first and most comprehensive study of Black parents’ experiences of prenatal testing in England. The findings provide important evidence to support more equitable prenatal genetic and genomic services within the NHS, particularly in relation to communication, support and informed decision-making. The research is now informing education for healthcare professionals and contributing to wider national discussions on maternal health equity and reducing healthcare disparities.

This project demonstrates how inclusive research can move beyond representation to genuinely centre the experiences, priorities and expertise of underrepresented communities. By embedding community partnership, recognising lived experience as a form of expertise, and ensuring findings are shared back in accessible ways, the study provides a strong example of how EDI can be integrated across every stage of the research process.

• Think critically about what “inclusion” actually means

Inclusion does not automatically equate to equity or equality. It is possible for research to include people from diverse backgrounds while the wider systems and structures affecting those communities remain inequitable. Researchers therefore need to think beyond representation alone and consider how research can meaningfully contribute to improved experiences, structural change, and more equitable outcomes.

• Build inclusion into the foundations of the research

Inclusion should not be treated as an afterthought or something added onto a project once the research question has already been decided. It needs to shape the research from the outset, including the questions being asked, the methods being used, and the way communities are involved throughout the process.

• Invest time in genuine community engagement

Researchers need to allow time to genuinely engage with and understand the communities they hope to work with, rather than approaching inclusion in a tokenistic way. Building rapport, listening to communities, and thinking carefully about accessibility and communication are all important before the research begins.

• Avoid extractive research practices

People should not feel that they are simply being approached to provide data and then never hear from researchers again. Ongoing communication is crucial and participants should be able to see how their experiences have shaped the research, what impact the work has had, and how findings are being used more widely.

Breaking Barriers: Co-designing Inclusive Respiratory Research with Families of Children with Neurological Impairment

Research Lead: Dr Amy Nuttall

Theme: Patient and Public Involvement and Engagement (PPIE) and Equity, Diversity and Inclusion (EDI)

Children with complex neurological impairment (CNI) experience a high burden of respiratory illness but are often underrepresented in research. Dr Amy Nuttall’s project aims to understand and address barriers that prevent families from participating in research, ensuring future respiratory studies are designed around the needs and priorities of children and families living with complex health conditions.

The project places patient and public involvement at its core. Parents and carers have helped shape the research from the outset, identifying the practical challenges of participating in research alongside significant caring responsibilities. Families are involved in reviewing research tools, discussing outcomes that matter most to them, and co-producing recommendations for future studies.

To make participation more accessible, engagement activities are integrated into existing clinic and physiotherapy appointments where possible. Families can choose to participate through face-to-face or virtual focus groups, online or paper surveys, and telephone discussions, helping to reduce travel and time burdens.

Recognising that traditional research approaches can unintentionally exclude those with the greatest healthcare needs, the project actively seeks to remove barriers to participation. Recruitment takes place across respiratory clinics, inpatient services and community physiotherapy settings, with translation support available where needed. Families are recognised as experts in their own experiences and are reimbursed for their time and expenses.

This project demonstrates how inclusive research can be achieved by designing studies around participants’ lives rather than expecting participants to fit around research. Through early and meaningful involvement, flexible engagement methods and a commitment to addressing barriers to participation, the project is helping to ensure that future respiratory research is more representative, equitable and relevant to the families it aims to serve.

• Embedding PPIE at the earliest stage of research development.
• Designing involvement opportunities around existing clinical appointments.
• Offering flexible virtual and face-to-face participation options.
• Reimbursing participants and recognising their expertise.
• Involving families in shaping research tools, outcomes and future study design.
• Providing translation services to widen participation.