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Making sure everyone can take part: practical strategies for inclusive research design in early cancer diagnosis 

Jessica Rees, Lizzie Merrill, Natalie Gil, Hannah Drysdale, Robert S. Kerrison, Luke Mounce, Katriina L. Whitaker, Anna Cox, Georgia Black

The team will deliver an interactive workshop at the Ca‑PRI 2026 conference focused on practical approaches to inclusive research design, with particular attention to addressing inequalities in early cancer diagnosis.

Drawing on experiences from CancerLearn, the session will highlight how planning for inclusion at the earliest stages of research can improve accessibility, participation and methodological rigour.

The workshop will introduce key inclusive research frameworks, including co‑production, participatory design, alongside the use of a multi-level perspective to consider how barriers to inclusion operate across individual, interpersonal, organisational and structural contexts. 

Participants will be introduced to an inclusive research toolkit co‑produced with Patient and Public Involvement and Engagement (PPIE) partners, featuring Easy Read and audio materials, visual communication tools, Talking Mats, Makaton, and a short film developed with people with lived experience.

Interactive group exercises will invite attendees to work through real‑world research scenarios, supporting them to design more inclusive approaches for diverse populations, including people from minoritised ethnic groups, neurodivergent people, people with physical disabilities, and those experiencing socioeconomic disadvantage.

Complex Health Challenges: Learning disability in cancer care

Dr Natalie Gil

Dr Natalie Gil was invited to deliver a clinician-focused talk on improving cancer care for people with a learning disability. Drawing on her doctoral research, the presentation highlighted how inequities arise across the cancer pathway, shaped by service design, communication barriers, and implicit assumptions about the “normative patient”. It emphasised practical implications for clinical practice, including the need for reasonable adjustments, continuity of care, and more flexible, person-centred approaches to diagnosis and treatment.

Resources:

• Complex Health Challenges: Learning disability in cancer care (pptx)

Understanding the Cancer Diagnosis Pathway: Experiences of Adults with a Learning Disability and Those Who Support Them

Natalie Gil*, Robert S. Kerrison, Katriina L. Whitaker, Emily McBride, Anna Cox. 

*corresponding author

Dr Natalie Gil recently presented her work at the British Psychosocial Oncology Society Annual Conference, sharing findings from her doctoral research on inequities in cancer diagnosis and care for people with a learning disability. In a short-format flash talk, she highlighted how barriers arise across the cancer pathway, from symptom recognition through to diagnosis, shaped by stigma, service inflexibility, and reliance on a “normative patient” model of care. Drawing on qualitative insights from adults with a learning disability and their supporters, the presentation introduced the concept of advocated-candidacy to describe how, for people with a learning disability, access to care is often mediated by others. 

Resources:

• Understanding the Cancer Diagnosis Pathway: Experiences of Adults with a Learning Disability and Those Who Support Them (pptx)

Inclusive research to understand the barriers and enablers to early cancer diagnosis for learning disabled people

Jessica Rees, Lizzie Merrill, Hannah Drysdale, Natalie Gil, Luke Mounce, Bianca Wiering, Katriina L. Whitaker, Robert S. Kerrison, Diana Frost, Scott Watkin, Helen Guest, Ruth Northway, Anna Cox, Georgia Black

Dr Lizzie Merrill and Dr Jess Rees presented on our inclusive research approach to understanding the barriers and enablers to early cancer diagnosis for people with a learning disability.

The presentation highlighted methodological learning, particularly the value of working closely with both experts by profession and experts by experience to shape research design and delivery. We shared our approach to co-producing accessible materials, including Easy Read and audio participant information, and introduced a short film developed with people with a learning disability to support engagement.

We also outlined the use of inclusive communication tools, such as Makaton and Talking Mats, to facilitate participation among individuals with diverse communication needs.

Understanding the Cancer Diagnosis Pathway: Experiences of Adults with a Learning Disability and Those Who Support Them

Natalie Gil, Robert S. Kerrison, Katriina L. Whitaker, Emily McBride, Anna Cox

This poster presented findings from qualitative research exploring experiences of cancer diagnosis. It highlighted how access to care is shaped by stigma, service inflexibility, and reliance on a “normative patient” model, and introduced the concept of advocated candidacy to describe how access is often mediated by supporters.

Innovations to Support Symptomatic Cancer Diagnostic Pathways for People with an Intellectual Disability: A Systematic Scoping Review

Natalie Gil, Katriina L. Whitaker, Robert S. Kerrison, Hannah Drysdale, Georgia Black, Luke Mounce, Ruth Northway, Anna Cox

This poster presented findings from a systematic scoping review identifying innovations aimed at improving early cancer diagnosis for people with a learning disability. The work maps existing approaches and highlights gaps in the evidence base, supporting the development of more targeted and scalable interventions.

Co-creating a health survey with people with a learning disability. 

Mar Estupiñan, Esra Hassan, Arsene Hobabagabo, Claire Friedemann Smith, Christian von Wagner, Anna Cox, Robert S. Kerrison, Katriina L. Whitaker

This poster outlined the development of an inclusive health survey, designed with and for people with a learning disability to ensure their experiences and needs are meaningfully represented in healthcare design.

Resources:

• Inclusive research to understand the barriers and enablers to early cancer diagnosis for learning disabled people (pptx)
• Co-creating a health survey with people with a learning disability (pptx).

Cancer risk-factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review

Natalie Gil, Anna Cox, Katriina L. Whitaker, Robert S. Kerrison

This poster presented findings from a systematic scoping review examining cancer risk-factor and symptom awareness among adults with a learning disability, as well as paid and unpaid carers and healthcare professionals. The work identified gaps and variation in awareness across groups, highlighting implications for early diagnosis and the need for more targeted, inclusive approaches to cancer awareness.

Resources:

• Cancer risk-factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review (PDF)

Pro-Active Community Engagement 

Members of the research team, including Dr Anna Cox, Dr Natalie Gil and Dr Lizzie Merrill, have engaged with the Pro-Active Community, a ����Vlog-based network of people with lived experience of learning disability, autism, and acquired brain injury. The group brings together experts by experience to share perspectives, influence services, and campaign on issues that affect their lives, working collaboratively with organisations and decision-makers. 

Through multiple attendances at Pro-Active Community meetings and related sessions, the team have shared project ideas, research materials, and emerging findings. These sessions have provided a space for open discussion and feedback, supporting the co-development and refinement of research focused on cancer awareness, early diagnosis, and access to care for people with a learning disability.

Impact and learning:

Ongoing engagement with the Pro-Active Community has supported an iterative, inclusive approach to research, ensuring that materials are accessible and that findings are grounded in lived experience. This has strengthened the relevance, acceptability, and real-world applicability of research aimed at improving cancer diagnosis and care for people with a learning disability.

Managing My Health Event 2025

Dr Anna Cox and Dr Natalie Gil attended a “Managing My Health” community event in ����Vlog, organised by Active Prospects, a charitable organisation supporting people with a learning disability and complex needs to live independent and fulfilling lives. The event brought together people with lived experience, support staff, and community organisations to share knowledge and promote health and wellbeing.

As part of this session, Anna and Natalie shared findings from their scoping review on innovations to support symptomatic cancer diagnosis among people with a learning disability. The session focused on making research findings accessible and relevant to a community audience, while also inviting feedback to inform interpretation and future work.

Impact and learning:

This engagement provided an opportunity to share emerging findings directly with people with lived experience and those supporting them, supporting reciprocal learning. Feedback from attendees helped to ground the research in real-world experiences and strengthened the relevance and applicability of ongoing work on improving early cancer diagnosis.

Cancer: the importance of finding out early

Dr Natalie Gil was invited to deliver a talk at a community workshop focused on cancer prevention and early diagnosis for people with a learning disability. The session highlighted the importance of recognising potential cancer symptoms and seeking timely support, while acknowledging the barriers that people with a learning disability may face within healthcare systems.

The presentation was tailored for a community audience, using accessible language and examples to support understanding and engagement.

Impact and learning:

This event provided an opportunity to share key messages on early diagnosis directly with people with lived experience and community organisations, supporting awareness and contributing to more inclusive, community-informed approaches to cancer care.

Our research on learning disability and cancer is closely aligned with international efforts to address inequities in cancer prevention, diagnosis, and care for people with a learning disability. One of the key mechanisms supporting this work is engagement with the COST Action CUPID (Cancer: Understanding Prevention in Intellectual Disability) network.

CUPID is a European research collaboration funded through the European Cooperation in Science and Technology (COST) framework. The Action brings together a multidisciplinary network of researchers, clinicians, and practitioners working across intellectual disability and cancer. Members include primary and secondary care clinicians, specialist intellectual disability practitioners, psychologists, health scientists, and public health researchers, alongside experts in inclusive research and patient engagement.

The network aims to advance understanding of cancer prevention and early diagnosis for people with intellectual disability, with a strong emphasis on equity, inclusion, and international knowledge exchange. Activities include annual conferences, training schools, webinars, and collaborative research initiatives.

Dr Anna Cox and Dr Natalie Gil are members of ‘Working Group 1 (WG1): the interdisciplinary co-production team’. WG1 focuses on:

Co-producing a knowledge base on cancer prevention with people with intellectual disabilities and key stakeholders, ensuring lived experience is central to understanding prevention needs 

Facilitating international collaboration and knowledge exchange between researchers, clinicians, carers, and advocacy groups to identify barriers and enablers to cancer prevention 

Identifying priorities for research, training, and practice, including recommendations to adapt cancer prevention programmes to better meet the needs of people with intellectual disabilities

This work aligns closely with ����Vlog cancer expert group aims, particularly in relation to identifying where inequities arise across the cancer pathway and how these can be addressed through research, practice, and system-level change.

Further information: 

Engagement and contributions to CUPID

Natalie has actively contributed to the CUPID programme through presentations, workshops, and collaborative activities across multiple international events:

• CUPID Annual Training School & Conference, Dublin (2025)
   Delivered a workshop on systematic evidence mapping and synthesis in relation to intellectual disability and cancer care, contributing to methodological capacity-building within the network. 
• CUPID Annual Scientific Webinar (2025)
   Presented findings from a scoping review examining cancer risk-factor and symptom awareness among adults with intellectual disability, carers, and healthcare professionals. 
• CUPID Early Career Researcher Network Meeting, Amsterdam (2025)
   Delivered an oral presentation and facilitated an expert-by-profession consultation on innovations to support symptomatic cancer diagnosis pathways for adults with intellectual disability. 
• CUPID 3rd Annual Conference (2025, webinar)
   Presented an overview of doctoral research focusing on experiences of cancer diagnosis and inclusive research approaches. 
• CUPID Annual Conference, Brussels (2026) (upcoming)
   Two abstracts have been accepted for presentation: 
  
  • ‘I’m fighting my case all the time’. Candidacy, stigma and negotiated access in cancer care: experiences of adults with a learning disability and their supporters
  • Natalie Gil, Robert S. Kerrison, Katriina L. Whitaker, Emily McBride, Anna Cox
  • Inequalities in routes to diagnosis for breast, colorectal, lung and prostate cancers among people with an intellectual disability: A UK cohort study. 
  • Gil, N.M., Cox, A., Perchyk, T., Whitaker, K. L., and Kerrison, R. S.

Together, these contributions bring experiential and epidemiological perspectives to strengthen understanding of inequities in cancer diagnosis.

Short-Term Scientific Mission (STSM), Netherlands (2026)

Dr Natalie Gil has been awarded funding through the CUPID programme to undertake a Short-Term Scientific Mission (STSM) in the Netherlands.

This visit will involve collaboration with colleagues at Radboud University Medical Centre and Tranzo, Tilburg University, where there are well-established, embedded co-researcher programmes involving people with lived experience.

The STSM will focus on:

• Understanding how inclusive research is structurally embedded within research institutions 
• Exploring how co-researcher models are resourced, sustained, and operationalised in practice 
• Engaging with clinical teams to examine how inclusive principles are enacted in everyday healthcare delivery, including communication, decision-making, and continuity of care 
• Identifying transferable approaches to improving equitable access to cancer diagnosis for people with a learning disability 

Activities will include researcher and clinician shadowing, engagement with co-researchers, and stakeholder discussions.

Impact and learning

Insights from the STSM will:

• Directly inform CancerLearn Work Package 3 (WP3) by strengthening identification and characterisation of inclusive diagnostic pathways 
• Contribute to Work Package 4 (WP4) by supporting the translation of findings into actionable recommendations for policy and practice 
• Provide broader learning on how inclusive research can be embedded as core infrastructure within universities and healthcare systems, rather than applied retrospectively 

The visit also strengthens international collaboration within the CUPID network, particularly among researchers and clinicians working at the intersection of intellectual disability and cancer.

Additional Resources:

• CUPID Scientific Webinar Presentation (pptx)