a Youth Cancer Europe Advocacy Project

Recognising that social determinants (such as age, socioeconomic status, ethnicity, sexual orientation, gender identity, or for example cultural backgrounds) can significantly contribute to disparities in healthcare access and treatment benefit for young people across Europe, Youth Cancer Europe has focused its efforts on addressing equity, diversity, and inclusion (EDI) in cancer care through a series of strategic actions between 2023 and 2024. 

This report details the outcomes of YCE’s EDI-focused work, including high-level policy engagement, stakeholder consultations, and widespread dissemination efforts. These activities not only amplified the voices of underrepresented communities but also contributed to shaping EU and national policies to drive forward more equitable healthcare practices.

Engagement with EU Decisionmakers

In 2023, Youth Cancer Europe (YCE) participated in the EU Cancer Mission’s Quality-of-Life consultation series, engaging 70 young people with lived cancer experience to gather insights on unmet needs. On 15 December 2023, YCE contributed to a joint meeting with DG RTD and DG SANTE. The Consultation Report acknowledged YCE’s input, stating: “Information available on the Cancer Mission implementation and its interplay with Europe’s Beating Cancer Plan is rather scattered; emphasis was placed on minority groups and disadvantaged people, as particularly hard to reach.”

YCE’s contributions were reflected in the final recommendations (EU Cancer Mission Consultation Report (December 2023), which called for “enhanced outreach to local communities” and “further research to better understand the needs of minority and disadvantaged populations.”

Health Equity Under the Microscope: Webinars and Awareness Events on Social Determinants of Cancer Outcomes

Between March and September 2023, several events took place addressing equity, diversity, and inclusion (EDI) in cancer care, each focusing on distinct social determinants impacting health outcomes. We also spoke at 2 congresses, focusing on the core objective of spotlighting inequalities and offering actionable solutions.

Equity, Diversity and Inclusion in Cancer Care Webinar – 30 April 2023

The webinar amplified the voices of young cancer patients, addressing how age, gender, race, and socioeconomic status impact access to care. Patient advocates from 15 countries shared experiences, highlighting discrimination and barriers in healthcare. Johan de Munter (University Hospital Ghent) and Diana Todea (Little People Romania) provided practical insights on embedding EDI in clinical settings. Katie Rizvi, Urška Košir, and Carmen Monge-Montero presented policy recommendations calling for mandatory EDI training in healthcare institutions and inclusive patient communication. Over 100 participants contributed to the dialogue, driving forward actionable strategies for more equitable cancer care across Europe.

Upscaling Adolescent and Young Adult Cancer Care Webinar – 20 June 2023

This virtual roundtable brought together leading experts, patient advocates, and policymakers to address the inequities in cancer care for adolescents and young adults (AYA) across Europe, focusing on the need to establish minimum standards of care. Chaired by Dr. Daniel Stark (University of Leeds/SIOPE) and Katie Rizvi (Youth Cancer Europe), the discussion centred on the structural, financial, and policy barriers that prevent equitable access to AYA-specific services.

Speakers, including Tim Van Hoorenbeke (Kom op tegen Kanker), Johan De Munter (University Hospital Ghent), Dr. Ulrike Leiss (Medical University of Vienna), and Jan-Willem Van-de-Loo (DG Research and Innovation), highlighted disparities in care availability, inconsistent funding, and the lack of inclusive healthcare environments. The event reinforced the need for sustainable policies, cross-border collaboration, and greater recognition of AYA needs to ensure equitable cancer outcomes for all young people, regardless of location or background.

Mental Health and Self-Acceptance in Cancer Care online event – 8 September 2024

The webinar held on Discord explored the vital role of mental well-being and self-acceptance in empowering young people with cancer to navigate healthcare and make informed decisions. Recognising that emotional resilience influences access to services, the session addressed how self-worth helps individuals advocate for their needs, set boundaries, and prioritise well-being.

Participants reflected on what self-acceptance means during and after cancer, with discussions on embracing strengths and vulnerabilities to improve confidence in healthcare settings. Practical strategies for building and sustaining self-acceptance were shared, alongside insights into how peer support fosters emotional healing and helps reduce disparities in mental health care.

By promoting self-care as a core element of equitable cancer care, the event highlighted the connection between mental health, healthcare navigation, and ensuring young people receive the support they deserve.

Two Wars, One Person – Nataly Hrad on refugee and migrant population’s access to cancer care

Youth Cancer Europe’s patient advocate Nataly Hrad shared her lived experience as a Ukrainian cancer patient during the war, addressing barriers faced by refugee and migrant populations in accessing cancer care across Europe. Her talk on ESMO Congress 2024 highlighted the need for cultural sensitivity and transnational support mechanisms.

LGBTIQ+ Advocacy and Cancer Care Webinar – 24 April 2024

The Discord webinar highlighted the unique challenges faced by LGBTIQ+ individuals in cancer care, focusing on screening inequalities, discrimination, and the need for inclusive, patient-centred care.

Stewart O’Callaghan (they/them), Founder and CEO of OUTpatients, shared their journey with Chronic Myeloid Leukaemia and the inspiration behind creating the UK’s leading LGBTIQ+ cancer charity. They addressed disparities in cancer risks for trans individuals and the importance of educating healthcare professionals on trans-inclusive care.

Levi K. (they/them), a trans patient advocate, reflected on navigating cancer and identity, underscoring the need for representation and equity in healthcare. The session amplified voices within the LGBTIQ+ community, advocating for systemic change and greater inclusivity in cancer care services.

Addressing Health Equity and Rare Cancers – EONS17 / ESMO2024

YCE’s two talks focused on the intersection of health equity, socio-economic barriers, and rare cancers, bringing patient perspectives to the forefront of policy discussions. 

In “Advancing Health Equity in Cancer Care,” Katie Rizvi highlighted how financial instability and limited resources negatively impact cancer outcomes, calling for targeted interventions to improve access for underserved communities. Existing policies and initiatives aimed at reducing disparities were reviewed, with a focus on driving systemic change.

In “Addressing the Unmet Needs in Rare Cancers,” K. Rizvi (YCE) engaged in an on-stage dialogue with Prof. Jeliazko Arabadjiev, Board Member of the EU Mission on Cancer.. The discussion addressed the mental health toll, financial strain, and lack of access to clinical trials faced by rare cancer patients. The session highlighted the need for policy reforms to tackle inequities in diagnosis, treatment, and survivorship. Both sessions underscored the importance of inclusive strategies to ensure equitable cancer care across Europe.

Throughout these events, YCE promoted greater visibility for underrepresented groups, advocated for enhanced health literacy, and addressed systemic inequalities in cancer care. These, and upcoming engagements will continue to inform EU-level discussions and policy developments. 

Patient Voices Highlighting Inequalities in Cancer Care

In the following videos Carmen, April, Bradley, Erik, Karl and Ruth highlight personal stories from patients and advocates across Europe, showcasing the barriers faced by migrants, LGBTQ+ individuals, and neurodivergent patients in cancer care.

Belonging Beyond Borders: Facing Cancer as a Migrant

Fighting for Life and Rights: Facing Homophobia in Cancer Care

The Lasting Cycle Between Cancer and Socioeconomic Status

Navigating Cancer Care as a Neurodivergent Patient

Creating Safe Cancer Care for LGBTQ+ Patients

Addressing Barriers to Cancer Care for Migrants and Refugees

Why Inclusive Cancer Care Must Consider LGBTQ+ Patients’ Needs

Inclusive Health Access Dialogues and National-Level Engagement

In alignment with our commitment to fostering equitable healthcare across Europe, Youth Cancer Europe successfully organised and participated in a series of high-impact EDI events and policy dialogues throughout 2023 and 2024. These initiatives focused on amplifying the voices of underrepresented communities, strengthening collaboration across sectors, and influencing national and EU-level healthcare policies.

From Prejudice to Progress – Round Table and Workshops (Cluj-Napoca, 5-8 November 2023)

The round table, held on 6 November 2023 with 35 participants at the Radisson Blu in Cluj-Napoca, Romania, brought together distinguished leaders and experts to address pressing issues surrounding discrimination, equity, diversity, and inclusion (EDI) in healthcare and society. Organised by Youth Cancer Europe, the event opened with remarks by Emil Boc, Mayor of Cluj-Napoca, Prof. Razvan M. Chereches, MD PhD and Public Health Professor at Babes-Bolyai University, and Shajjad Rizvi MBE, Honorary British Consular Agent for Cluj-Napoca.

The first panel, “Breaking Down Barriers and Building Bridges,” moderated by Katie Rizvi, featured Dr. Laszlo Istvan-Peter, Medical Director of the “Prof. Dr. Ion Chiricuță” Oncology Institute in Cluj-Napoca, Dr. Delia Nicoară, Public Health Specialist, “Prof. Dr. Ion Chiricuță” Oncology Institute, Cluj- Napoca, Romania, Esraa Abdallah, Project Officer, Global Inclusion Department, Romanian Peace Institute (PATRIR), and Ruth Borgfjord, Founder of Queer Sisterhood Cluj. Discussions focused on fostering inclusion for underrepresented communities, highlighting cross-sector collaboration as essential for dismantling systemic barriers.

The second panel, “From Awareness to Action: Access to Health & Wellbeing,” delved into healthcare disparities and the urgent need for equitable access. Panellists included Dr. Nicoleta Antone, Medical Oncologist at the “Prof. Dr. Ion Chiricuță” Oncology Institute, Victor Gîrbu, Chief Performance Officer at Moldova’s Ministry of Labour and Social Protection and YCE Patient Advocate, Carmen Monge-Montero, YCE Researcher and Patient Advocate from the Netherlands, Stewart O’Callaghan, Founder and CEO of OUTpatients UK, and Dr. Emily Pattinson, Senior Diversity and Inclusion Consultant at Inclusive Employers UK. 

The subsequent EDI Workshop from 6 to 8 November gathered healthcare professionals, researchers, and advocates to address inclusion and cultural awareness in European healthcare. Discussions focused on identifying marginalised groups, understanding legal protections, and addressing societal and historical factors influencing discrimination. Participants explored overlooked inclusion topics in healthcare and highlighted issues raised by younger generations that often go unrecognised by older ones.

The workshop examined how cultural and national contexts shape behaviours, relationships, and team dynamics across different sectors. Specific challenges faced by clinicians, researchers, and patient advocates were analysed, with a focus on adapting inclusion efforts to meet the unique needs of each group. Attendees also discussed the role of inclusive language and the impact of using English as a primary medium, recognising the importance of addressing bias, privilege, and intersectionality in diverse healthcare settings.

European Parliament Policy Dialogue – Brussels (21 March 2024)

At the heart of YCE’s advocacy efforts, the policy dialogue at the European Parliament convened leading MEPs, patient advocates, and healthcare providers to present and discuss recommendations for equitable cancer care across the EU. Hosted by MEP Stelios Kympouropoulos a prominent member of the Committee on Employment and Social Affairs and the Disability Intergroup, and featuring MEP Tomislav Sokol, the high-level policy event convened policymakers, healthcare professionals, researchers, and patient advocates to present and discuss tangible actions to reduce healthcare disparities in cancer care.

Opening the session, MEP Kympouropoulos highlighted the critical importance of addressing inequalities in cancer care and fostering cross-border cooperation. Katie Rizvi, Co-founder and Executive Director of YCE, set the stage by presenting the rationale behind YCE’s policy recommendations, grounded in evidence from patient experiences and literature reviews. Carmen Monge Montero, a nutrition scientist and YCE researcher, shared insights from the comprehensive literature review, while Urska Kosir, research scientist and patient advocate, detailed key findings from surveys of patients and healthcare providers, amplifying the patient voice at the heart of the initiative.

Stewart O’Callaghan, Founder and CEO of OUTpatients, introduced the full policy document, emphasizing actionable recommendations to drive equitable cancer care. The event also featured MEP Tomislav Sokol, Rapporteur on reducing healthcare disparities, who provided the policymaker’s perspective on fostering cohesion and improving cross-border health collaboration.

Johan de Munter, Nurse Manager at Ghent University Hospital and former President of the European Oncology Nursing Society (EONS), brought the healthcare provider’s view, stressing the importance of integrating inclusive care practices. Victor Girbu, YCE Project Manager and patient advocate, outlined next steps, bridging policy with practical implementation at national and EU levels.

The event concluded with a moderated Q&A, fostering dynamic exchanges between audience members and speakers, reinforcing the role of patient advocacy in shaping EU health policies. The event represented a milestone in advancing the goals of Europe’s Beating Cancer Plan, ensuring equitable access to cancer care for all, particularly marginalised and minority communities.

National-Level Policy Engagement – Lithuanian Parliament (26 May 2024)

In collaboration with Monika Ošmianskienė, Chair of the Commission for People with Disabilities in Lithuania, YCE participated in a national policy event at the Lithuanian Parliament to address health equity and EDI in cancer care. The dialogue focused on aligning Lithuania’s healthcare policies with EU standards, also addressing the specific needs of disabled populations and minority groups as part of the broader European health equity agenda.

EDI in Cancer Care Training – Cluj-Napoca (3-12 June 2024)

The EDI in Cancer Care Training, co-organised by YCE and Inclusive Employers Ltd., welcomed 59 participants from 25 countries, representing 51 organisations across healthcare, academia, and patient advocacy. The programme, tailored for researchers (3-6 June), healthcare providers (6-9 June), and patient advocates (9-12 June), addressed inclusive communication, cultural competence, health inequalities, and advocacy. Sessions engaged participants in privilege and bias activities, discrimination response techniques, and strategies to foster inclusive environments. With 27% participants from vulnerable or minority backgrounds, this event reinforced YCE’s commitment to building capacity across diverse healthcare sectors.

EDI training at the European Network of Youth Cancer Survivors event – (7 – 12 August 2024)

On August 8, 2024, Youth Cancer Europe, in collaboration with Asociația Little People Romania, hosted the EU-CAYAS-NET closing event in Cluj-Napoca, Romania. Participants and partners from 32 countries attended networking events and workshops focusing on AYA cancer care, mental health, quality of life, survivorship, and Equity, Diversity & Inclusion (EDI) in cancer care.

Inclusivity Training – for Romanian young adults living beyond cancer (Timisoara, 13-14 December 2024)

On December 14th, 2024, YCE hosted an inclusivity training in Timisoara, Romania, bringing together 100 young people living with and beyond cancer in Romania. This initiative, supported by Little People Romania, marked the first local-language training of its kind, reflecting Romania’s diverse survivor community, including members from Roma and other ethnic minorities.

Key discussions centred on fostering a more inclusive and supportive environment within the Temerarii community by addressing cultural biases, social stigma, and the unique challenges faced by minority and marginalised members. Participants explored ways to build trust, challenge stereotypes, and ensure that all voices are heard and valued. The group reflected on how personal identity, cultural background, and lived experiences shape interactions and relationships within the community.

Interactive sessions focused on creating safe spaces, reducing judgment, and encouraging open dialogue to allow members to express themselves authentically. As a result, the community committed to establishing an EDI committee for 2025 to drive forward practical initiatives that enhance accessibility, representation, and inclusion. This committee will lead efforts to strengthen peer support, develop tailored outreach for minority groups, and implement measures that promote belonging for every member of the Temerarii community.

By engaging over 500 participants from 30 countries in a series of local and EU-level direct dialogues in 2024, YCE has driven forward inclusive cancer care initiatives, ensuring that marginalised voices inform healthcare reforms and that best practices in EDI are embedded across the European healthcare landscape.

Recommendations for Equitable and Inclusive Cancer Care in Europe

Building on the extensive research, consultations, peer visits, and stakeholder engagements conducted throughout 2023-2024, Youth Cancer Europe has developed a comprehensive set of recommendations to drive forward equitable, diverse, and inclusive (EDI) cancer care across Europe. This section summarises the core outcomes of the initiative, reflecting insights gained through webinars, round tables, literature reviews, and surveys, as well as direct feedback from healthcare professionals, patient advocates, and marginalised communities.

Methodology

The development of this white paper was grounded in a multi-faceted and participatory approach to ensure diverse perspectives and comprehensive data collection. Key components of the methodology included:

1. Literature Review

A scoping and grey literature review assessed 1,519 articles, narrowing the selection to 914 based on inclusion criteria related to age, category, and region. Applying a Europe-specific filter further reduced the pool to 90 articles for detailed analysis, revealing that 31% focused on childhood cancer and 11% on adolescent and young adult (AYA) cancer care. The review highlighted significant knowledge gaps, as topics concerning gender, sexuality, family, education, and career were less represented in European literature compared to global research. In total, 27 sources of grey literature were analysed, drawn primarily from official webpages (48%) and reports (28%), with the majority addressing issues related to race, ethnicity, gender, and sexuality.

2. Online Surveys

Two cross-sectional surveys were conducted to gather insights from both patients and healthcare professionals (HCPs). The patient survey, distributed in 12 European languages, engaged 128 participants from 25 countries, with an average age of 30.9. It collected both quantitative and qualitative data, revealing barriers related to marginalisation, difficulties navigating healthcare systems, and unmet needs. The healthcare provider survey, completed by 77 respondents across 22 EU countries with an average age of 51, targeted cancer-specific professionals such as oncologists, nurses, and researchers. Notably, 97% of HCP participants recognised the importance of equity, diversity, and inclusion (EDI) in cancer care but identified significant gaps in education and practical implementation.

3. Peer Visits to Leading Cancer Centres

Youth Cancer Europe facilitated peer visits to five leading adolescent and young adult (AYA) cancer centres in Italy, Belgium, and Netherlands (Istituto Nazionale dei Tumori, Italy; Ghent University Hospital, Belgium, The Netherlands Cancer Institute in Amsterdam, The Northwest Hospital Groups in Alkmaar and Radboudumc in Nijmegen, Netherlands). Thirty young advocates from 16 countries participated, conducting structured observations, semi-structured interviews, and surveys to gather insights from patients and hospital staff. These visits identified best practices in holistic care, psychosocial support, educational and vocational assistance, and palliative care. The findings highlighted the need to expand services, with a particular focus on addressing the needs of minority groups, neurodivergent patients, and individuals from lower socio-economic backgrounds.

4. Multi-Stakeholder Consultation and Workshop

The “From Prejudice to Progress” round table and workshop brought together 37 stakeholders from 17 countries in Cluj-Napoca, Romania. Participants included patient advocates, healthcare professionals, policymakers, researchers, and community leaders. The event facilitated cross-sector collaboration, focusing on strategies to integrate equity, diversity, and inclusion (EDI) principles into cancer care pathways. Key discussions emphasised the importance of inclusive language, case-based learning, and increasing the representation of lived experiences in policy development and service design.

Four Focus Areas

Based on our findings, we focused on four important areas to ensure fairness and inclusivity in cancer care:

Recommendations

Strengthening EDI in Research: Improving Patient Data Collection and Enhancing Research Team Diversity

• EU Member States should systematically, and within legal bounds, improve the data they hold for ethnicity, LGBTIQ+ identity, psychosocial development, quality of life, physical and mental health, education, socioeconomic status, and employment rights of cancer patients.
• The EU should work towards a standardised data collection framework, shared via the EU Health Policy Platform alongside other major EU initiatives.
• Equal emphasis should be placed on increasing diversity and inclusion within healthcare and research personnel, fostering representation across all levels of research and clinical care.

Improving EDI in Cancer Services: Providing Culturally Sensitive Care and Promoting Diverse Representation in Care Teams

• Cancer services should develop, improve, and implement culturally sensitive care, ensuring patients receive support that respects their cultural, psychosocial, financial, educational, reproductive, and sexual needs.
• Efforts must focus on promoting diverse representation in care teams to reflect the communities they serve.
• Patients with lived experience should be actively engaged in developing health strategies, funding decisions, service creation, and co-authoring policies, ensuring collaborative processes that prioritise patient perspectives and needs.

Fostering Diversity and Inclusion within Patient Organisations

• Patient organisations should proactively recruit individuals from diverse backgrounds to ensure inclusive representation at all levels.
• Training on cultural competency, unconscious bias, and inclusive practices should be embedded across patient advocacy groups.
• Organisations must implement policies and frameworks that promote inclusivity, equity, and accessibility within their operations and outreach activities.

Recommendations for the European Commission 

The position paper urges the European Commission to prioritise the integration of EDI principles across all EU health initiatives. This requires dedicated funding and resources for research, programmes, and interventions targeting disparities in cancer prevention, diagnosis, treatment, and survivorship among marginalised and underserved populations.

Additionally, the Commission is encouraged to:

• Expand the scope of social determinants included in the Inequalities Register, addressing factors beyond the currently captured data.
• Develop and implement EDI-focused policies, guidelines, and best practices across all member states to ensure equitable access to quality cancer care, irrespective of socio-economic status, ethnicity, gender identity, sexual orientation, or age.

Dissemination and Communication 

Throughout 2024, YCE presented findings from its EDI initiatives at several international forums, including the Lithuanian Parliament policy event in May, the AYA Cancer Conference in Ljubljana in June, and the WECAN Academy EDI training in July. In August, YCE led an EDI workshop and introduced the white paper to the EUCAYASNET consortium in Cluj-Napoca. Dissemination efforts continued into the autumn, with presentations at EONS 17 and the ESMO Congress in Madrid in September. YCE also shared recommendations at the Inspire2Live Annual Congress in Amsterdam in November and engaged with global stakeholders at Ethics and Equity – the 6th Global Adolescent and Young Adult Cancer Congress in Melbourne in December.

These engagements formed part of a broader communication strategy aimed at maintaining a continuous dialogue with clinicians, researchers, patient advocates, and policymakers. YCE leveraged these opportunities not only to share best practices and policy recommendations but also to highlight the systemic barriers faced by underrepresented groups in accessing cancer care. By ensuring consistent messaging across multiple platforms, YCE continues to reinforce the importance of embedding EDI principles in all aspects of cancer policy, research, and healthcare delivery.

What else is planned? 

In 2025, Youth Cancer Europe will continue advancing EDI in cancer care through thematic online meetings and speaking opportunities, addressing social determinants of cancer outcomes, featuring renowned speakers and EDI advocates, including Yasmin Ismail – Cultural Researcher (Zambian/UK, Netherlands), addressing cultural sensitivity in healthcare environments and Asako Osedo – Inclusive Design Researcher (Japan/Netherlands), focused on integrating neurodiversity and accessibility into cancer care, Françoise Meunier – Founder of the European Initiative on Ending Discrimination (Belgium), focusing on the rights of cancer survivors and tackling employment discrimination; Stewart O’Callaghan – Founder of OutPatients (UK), dedicated to improving cancer care for LGBTQI+ communities; as well as Katie Rizvi – YCE Co-founder and Executive Director, patient advocate and leading voice on AYA cancer care and health equity; and Carmen Monge – Health Equity Researcher at YCE, with expertise in policy analysis and advocacy for marginalised communities. The webinars will also include 20 patient advocates and panellists from over 12 countries, representing diverse experiences and care journeys across at least 8 European healthcare systems. Discussions will spotlight cross-border healthcare challenges, cultural sensitivity, mental health access, and financial barriers.

With gratitude to our generous sponsors for supporting YCE’s efforts in advancing Equity, Diversity and Inclusive Cancer Care