The European Network of Youth Cancer Survivors launches its Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe - Youth Cancer Europe (YCE)

The European Network of Youth Cancer Survivors launches its Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe

The European Parliament event organised by Youth Cancer Europe and hosted by MEP Stelios Kympouropoulos brought discrimination into focus and addressed the needs of minorities, vulnerable groups and disenfranchised communities like Roma, LGBTQ+, immigrants, and other underserved populations in the cancer care setting.

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 YCE, as part of the European Commission co-funded European Network of Youth Cancer Survivors project.

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

  1. 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.
  2. 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.
  3. 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.
  4. 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

Our recommendations for 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.

Our recommendations for 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.

Our recommendations for 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. Building on the findings that informed our recommendations, the project EDI workstream also set out to develop an Equity, Diversity and Inclusion Toolkit and Training Programme.The interactive curriculum featuring a train-the-trainer toolkit, in-person workshops and online content aims to equip three audiencesclinicians and healthcare providers; patient and community organisations; as well as researchers and educational institutions with greater awareness and skills to challenge prejudice and tailor cancer care to underserved groups. If interested, register here.

Read the full Policy Paper here

Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe

Find the translations of the Policy Paper in