Author: Florin Barnea

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.

Read the full English version of our Policy Paper here

Find the translations of the Policy Paper in

• Spanish
• Sweedish
• Romanian
• Portugese
• Polish
• German
• French
• Dutch

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.

The face-to-face training and in-person workshops were tailored for three distinct audiences, featuring dedicated sessions for each:

• Researchers, Academics, and Educational Institutions: Effective research requires diversity monitoring. Excluding individuals from vulnerable groups risks under-serving those most affected and perpetuating biases that devalue their experiences.
• Clinicians and Healthcare Providers: the Train-the-Trainer Toolkit aims to improve individual healthcare interactions, patient experience and thereby improve overall health outcomes.
• Patient and Community Organisations: EDI training for these organisations is a way of avoiding a “one size fits all” approach. Successful patient-facing organisations offer tailored support for cancer patients and survivors from minority groups.

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 HERE

Access the Train-the-Trainer Toolkit in other languages:

1. Croatian
2. Dutch
3. German
4. Italian
5. French
6. Lithuanian
7. Spanish

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