Inclusion of Underserved and Underrepresented Communities in Data Research – Rapid fire presentations

Authors: Chiamaka P. Ojiako (1), Genomics England’s ‘Genomics, Healthcare and You’ commissioned engagement programme (inclusive community engagement phase) delivered in partnership with The Social Agency, People Street and the Leap

1 Genomics England

Abstract

Genomics England commissioned the Genomics, Healthcare and You engagement programme to explore the attitudes of public and healthcare professionals towards the potential use of genomics in routine, preventive, healthcare for adults. The programme was delivered between October 2025 and June 2026 and comprised three phases: engagement with 181 healthcare professionals through a survey and workshops; inclusive community engagement with 83 participants from ethnically diverse and underserved communities in Bradford, Birmingham and East London; and a public dialogue in Newcastle and London with 112 participants broadly reflective of the population of England. Perspectives from the three engagement phases were brought together through a cross-strand sense-making workshop involving 36 participants.

This presentation will share lessons learned from the inclusive community engagement phase, which used community-led, place-based approaches, trusted local partners, culturally sensitive facilitation, layered communications, community languages where needed, and safe, trusted spaces for participants to situate genomics within wider contexts and experiences.

The session will focus on practical implications for engagement design, including the importance of working through trusted networks, being attentive to cultural and faith-based contexts, avoiding extractive engagement, and the value of meeting people where they are. It will offer transferable insights for those designing engagement for research that seeks to build trust with historically underserved communities.

Authors: Anna Woolman (1)

1 Health Data Research UK

Abstract

Over the past year, HDR UK has launched Take the Lead, a national programme supporting 26 under-served communities across the UK to explore how data can improve health and wellbeing. From within a research-focused institution, we have built a public-facing initiative that rethinks who can lead conversations on health data and statistics. By taking a broad definition of ‘health data’, including NHS records, health statistics, step counts and more, and offering small-grants of £1500 to communities, we supported 26 community-led creative projects that help new audiences to explore health data and statistics in their everyday lives.

Drawing on expertise from Voluntary and Community Sector Organisations (VCSO), this approach, which is unique within data research and statistics, has been built to complement traditional public engagement methods, like advisory groups and research involvement, acting as an initial bridge for the possibility of more in-depth engagement. By putting the communities in the driving seat and allowing them to direct how they engage with health data and statistics, we’re building confidence and developing their identity as data ambassadors.

In our session, you’ll hear from two Take the Lead grant recipients alongside programme lead Anna Woolman as they discuss the practicalities delivering community-based health data activities and the impact it has had on them and their audiences. Most importantly, this is a chance to hear directly from communities who rarely have a voice in data and statistics conversations.

We aim to create a safe, welcoming space for questions, ideas and concerns. By the end, we hope delegates leave with a clearer understanding of the barriers under-served communities face and feel empowered to engage with these audiences in their own work.

Authors: Beth Neale (1), Alex (2), Steph (2), Claire (2), Hammas (2), Christopher (2), Kate (2), Bavon (2), Norin (2), Zoe (2), Saida (2)

1 Designability, 2 Lived Experience Advisors

Abstract

The Unfair Index is Designability’s national study exploring where everyday life is most unfair for disabled people, unpaid carers, and parents of disabled children, young people and adults, and where inclusive design could make the biggest difference.

This session will share how Designability has worked with a diverse pan-disability group of Lived Experience Advisors to co-design the study from its development stage through to survey design, accessibility testing, outreach and dissemination planning. The session will be co-presented by Beth Neale, Inclusive Research Manager at Designability, and two Lived Experience Advisors who have shaped the work directly.

We will explore what meaningful involvement looks like when working with often underrepresented communities in research, particularly when no single person can represent the breadth of disabled people’s or carers’ experiences. The session will share practical learning on recruiting and supporting Advisors, creating accessible participation routes, shaping research questions and language, testing survey journeys, and building in space for challenge, reflection and change.

We will also reflect honestly on the tensions involved in this work, including balancing national-scale data collection with accessibility, working across diverse access needs and lived experiences, paying and supporting contributors well, and ensuring involvement is not tokenistic or decorative.

Attendees will hear both organisational and lived experience perspectives on what changed because Advisors were involved, what we learned through the process, and what we would do differently next time.

The session will be practical and reflective, offering learning for researchers, public engagement professionals, analysts, charities and public contributors who want to involve underserved communities more meaningfully in data and research. It will show how lived experience involvement can improve the relevance, ethics, accessibility and impact of research when contributors have genuine influence across the research lifecycle.

Authors: Alex Black (1), Roxanne Crosby-Nwaobi, Marie Cilliers, Anna Hoang, Sancia Lam, Abigail Omotosho, Hiranmayee Sudarsan, Poppy Pierce, Polly Rawlinson, Pearse Keane

1 INSIGHT Health Data Research Hub

Abstract

Our pilot study engaging with faith groups to encourage responsible health data has demonstrated that this approach can play a critical role in improving eye health outcomes for underserved communities.

We developed a study in collaboration with three faith groups in London representing Christian, Jewish, and Muslim worshippers, in response to widening inequalities in eye health across the UK, particularly for global majority populations (GMPs), who face disproportionately high rates of visual impairment and sight-threatening conditions.

GMP groups also remain underrepresented in health data research datasets, such as those used to train medical artificial intelligence (AI) tools. This can be addressed by increasing trust in responsible, culturally sensitive data-sharing practices, we have found.

Our study was informed by the context that 60% of people in England and Wales (71% in London) identify as religious and most people from a global majority background identify as religious (Office of National Statistics, 2021). Working with Christian, Jewish, and Muslim faith group members, we conducted focus group interviews and education sessions to explore knowledge, concerns, and expectations related to data sharing and eye care.

We found that while faith plays a role in healthcare decisions, concerns over privacy, institutional trust, and tangible community benefits are the primary drivers of attitudes toward health data sharing. Working with communities to address these concerns is critical to helping the UK meet its United Nations Sustainable Development Goals.

We propose sharing our findings and next steps, including: co-creating a pilot toolkit, responding directly to the priorities voiced by participants. The toolkit will outline transparent communication practices, culturally competent approaches, and strategies for partnership between healthcare providers and faith communities. Additionally, over the next four years, we will build on our initial findings to engage more faith communities nationwide and deepen our level of engagement around health data-sharing.

Authors: Sophia Wilkinson (1), Samina Begum (2), Onche Godwin Daudu (2), John Kellas

1 Bennett Institute for Applied Data Science, University of Oxford, 2 Public Collaborators

Abstract

This presentation shares learning from two in-person workshops with historically excluded communities that aimed to understand people’s feelings about data sharing and OpenSAFELY. OpenSAFELY is a software platform for analysing large, sensitive datasets securely, built and maintained by the Bennett Institute for Applied Data Science (University of Oxford) with NHS England.

Public trust is central to OpenSAFELY’s operation. The public are involved via its Digital Critical Friends group. The team has also engaged more widely through a series of online workshops. Among the recommendations were:

• design involvement activities to include more people uncomfortable with data sharing
• run targeted workshops to reach less represented groups

In response, the Bennett Institute worked with two Digital Critical Friends from seldom-heard communities—the Pakistani community in Bradford, Yorkshire, and the Black British African and Caribbean community in Colchester, Essex—to co-design and deliver two workshops. Samina Begum and Onche Godwin Daudu (Digital Critical Friends) will present the methods and best practices from these workshops.

Colchester—organised by Godwin through AFiUK (African Families in the UK) and held at Colchester City Church—was an in-person version of the online workshops, using a film, presentation, discussion and simple participatory activities in English.

Bradford, organised by Samina and co-designed and facilitated by community workers from the Khidmat Centre, was delivered in English and Urdu, with Urdu-language videos and a culturally appropriate analogy used instead of standard OpenSAFELY explainers.

Cross-cutting themes emerged:

• Prior awareness was near zero: 34 of 37 participants had never heard of OpenSAFELY.
• Trust depends on how it is explained: the analogy used in Bradford made the security model intelligible.
• Reciprocity matters: participants want to see what their data contributes and to feel that contributing has consequences.
  • Concerns are specific, not abstract: both groups wanted named scenarios of who can and cannot access data, not general reassurances.
  • Under-research is a motivator: participants in both communities framed data sharing as an act of agency.
  • The stereotype that people from some communities cannot understand data research was dispelled.

Please note that this will be a pre-recorded presentation.

Authors: Ali Timmons (1)

1 Health Data Research UK

Abstract

LGBTQIA+ people remain largely underrepresented in cancer research and health datasets, limiting understanding of their experiences, outcomes, and priorities. While there is growing interest in improving inclusion within health data research, relatively little is known about how LGBTQIA+ communities affected by cancer wish to engage with research involving data, statistics, and emerging technologies.

To address this gap, Health Data Research UK partnered with OUTpatients, a UK-based LGBTQIA+ cancer charity, to create a community-led engagement project exploring priorities for health data research among LGBTQIA+ people with lived experience of cancer. The project utilised a mixed-methods approach, including two focus groups, a healthcare professional survey, an LGBTQIA+ lived experience survey, and a collaborative prioritisation workshop involving LGBTQIA+ community members.

Across the project, participants highlighted the importance of trust, safety and transparency in both healthcare and research settings. Previous experiences of discrimination and exclusion influenced willingness to disclose sexual orientation and gender identity information, while concerns around privacy, misuse of data for anti-LGBTQIA+ agendas, and a lack of structured and uniform data collection proved barriers to participation. Participants identified significant gaps in LGBTQIA+ representation within cancer data and research and highlighted known increased risks for some cancer types, such as gynaecological cancers among lesbians, which were not widely recognised by healthcare professionals. Participants explored opportunities to improve inclusion through co-produced policy changes, clearer communication with NHS professionals and health data researchers, and more meaningful involvement throughout the research process. Healthcare professionals expressed interest in better training and guidance on collecting sex and gender data and shared mixed views on its value to health research.

This presentation will share the engagement approach, key findings, and public-facing outputs from the project, focusing on practical considerations for involving underserved communities in health data research. Attendees will explore how lived experience can inform research priorities and how researchers, healthcare professionals, community organisations and patients can work collaboratively to design more inclusive and equitable data research.