Equity, Diversity and Inclusion in Cancer Care
The right of everyone to access healthcare is enshrined in Article 35 of the European Union's Charter on Fundamental Rights, yet cancer care access and outcomes for young people can vary greatly depending on a multitude of factors.
The European Parliament event organised by Youth Cancer Europe and hosted by MEP Stelios Kympouropoulos brought into focus issues of equity, diversity, and inclusion and addressed the needs of minorities, vulnerable groups and disenfranchised communities like Roma, LGBTQ+, migrants, and other underserved populations in the cancer care settings across Europe.
The Recommendations were developed collaboratively and the process was led by young people living within and beyond cancer in the Equity, Diversity, and Inclusion (EDI) workstream overseen by Youth Cancer Europe, as part of the European Commission co-funded European Network of Youth Cancer Survivors project.
Focus Areas for Fairness and Inclusivity
Based on the findings, four important areas were highlighted to ensure fairness and inclusivity in cancer care
Race, ethnicity, culture, refugee, or migrant status
To address disparities and ensure equitable access to cancer care for individuals from diverse racial, ethnic, and cultural backgrounds, including refugees and migrants.
Gender identity and sexual orientation
To promote awareness and support for LGBTIQ+ individuals affected by cancer, ensuring they receive respectful and inclusive care regardless of their gender identity or sexual orientation.
Age, physical and mental development, and wellbeing
To recognize the unique needs of individuals at different stages of life, including children, adolescents, and young adults, and recognise mental health status and neurodiversity as important determinants of health outcomes.
Education, career, and socioeconomic status
To address social determinants of health and ensure that individuals from all socioeconomic backgrounds have access to quality cancer care, regardless of their education level, career status, or living conditions.
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 that is shared via the EU Health Policy Platform alongside other major EU initiatives. An equal weight should be given to efforts to increase diversity and inclusion in healthcare and research personnel.
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 that patients receive support that respects their cultural, psychosocial, financial, educational, reproductive, and sexual needs. Inclusive cancer services also require the promotion of diverse representation in care teams to better reflect the communities they serve. Patients with lived experience should be actively engaged in health strategy development, funding decisions and building services and the co-creation of new policies related to their care, fostering a collaborative approach that prioritises their unique perspectives and needs.
Fostering diversity and inclusion within patient organisations
Patient organisations should have a more proactive approach to achieving diversity and inclusion by actively recruiting individuals from diverse backgrounds, providing training on cultural competency and sensitivity, and implementing policies and practices that promote inclusivity and equity within the organisation. By embracing diversity and inclusion, patient organisations can better serve their communities and advocate for more equitable healthcare policies and services.
We also urge the Commission to prioritise the integration of equity, diversity, and inclusion (EDI) principles throughout all EU health initiatives with dedicated funding and resources for research, programs, and interventions aimed at addressing disparities in cancer prevention, diagnosis, treatment, and survivorship among marginalised and underserved populations, and look at social determinants beyond the currently captured data in the Inequalities Register.
Additionally, the Commission should promote the development and implementation of EDI-focused policies, guidelines, and best practices across EU member states to ensure equitable access to quality cancer care for all individuals, regardless of their socio-economic status, ethnicity, gender identity, sexual orientation, age, or other factors.
The European Network of Youth Cancer Survivors project demonstrates how multi-stakeholder engagement can inform practical steps towards more equitable and inclusive cancer care.
Train-the-Trainer Toolkit
Building on the findings that informed our recommendations, Youth Cancer Europe organised together with Inclusive Employers the "Equity, Diversity and Inclusion Principles in Cancer Care" Training Event while launching the Train-the-Trainer Toolkit as part of the European Network of Youth Cancer Survivors European Commission co-funded project.
Target Audiences
The face-to-face training and in-person workshops were tailored for three distinct audiences:
All training sessions, incorporating the Train-the-Trainer Toolkit, were developed in partnership with patients, academics, and healthcare providers to ensure they tackle real-world challenges and offer practical strategies for promoting Equity, Diversity, and Inclusion in cancer care.
The event organised by Youth Cancer Europe served as a pilot for a Train-the-Trainer Toolkit designed to suit the participants' specific roles within the healthcare system. Having a strong focus on the unique needs of groups that are underrepresented, this Toolkit aims to empower participants to return to their institutions, disseminate the information, and actively contribute to more equitable and comprehensive cancer care outcomes.
All participants received a workbook to support their learning during the training sessions and provide additional information. This will enable clinicians, researchers, healthcare providers, and patient advocates to incorporate different tools and techniques into their daily work to ultimately improve the quality of care for young people living with and beyond cancer. The training sessions covered a wide variety of topics like cultural awareness, recognizing inequality, inclusive communication, creating a safe environment, supporting families, empowering patients, addressing discrimination, conducting comprehensive needs assessments, employing inclusive research techniques, effective advocacy, and much more.
Access the full English version of the "Equity, Diversity and Inclusion Principles in Cancer Care" Train-the-Trainer Toolkit:
Train-the-Trainer Toolkit (English)Toolkit Translations:
Promotional Materials
Download our EDI pocket cards to help spread awareness about equity, diversity and inclusion principles in cancer care.
