Florin Barnea, Author at Youth Cancer Europe (YCE)

Between the 5th and 8th of November, Youth Cancer Europe hosted the ‘From Prejudice to Progress: Discrimination, Equity, Diversity & Inclusion Round Table and Workshops‘ event as leaders of Work Package 5 within the European Network of Youth Cancer Survivors, a project funded by the European Commission to deliver on Europe’s Beating Cancer Plan.

The event focused on the development of an Equity, Diversity & Inclusion (EDI) Training Toolkit for healthcare professionals, researchers, and patient support organisations that will be launched in 2024.

This event was the perfect opportunity to: 

  • Gather input from patient advocates, researchers, healthcare professionals, and policymakers. This information will help us to better design and customise the content of the EDI Training Toolkit.
  • Create meaningful connections as the training vendor met and engaged with our community of young cancer survivors and patient advocates. 
  • Explore the challenges, opportunities, and strategies related to equity, diversity, and inclusion in cancer care and focus on the specific needs of the 3 main groups that need to be trained: Clinicians/Healthcare Providers, Researchers, and Patient/Youth Advocates
  • Align on the desired outcomes for the upcoming EDI Training in April 2024 and make sure that we have a shared understanding of the goals we want to achieve.

We kicked off the event with an engaging Round Table with Romanian and International experts as panellists: public health specialists, global inclusion leaders, healthcare providers, researchers, and expert speakers on challenges faced by minority populations, moderated by Katie Rizvi, Youth Cancer Europe’s executive director.

The discussion addressed issues like the insufficient European data on cancer outcomes among ethnic minorities, migrants, refugees, and disparities within the LGBTQ+ community.

Moving from awareness to action, YCE’s patient advocates Carmen Monge-Montero, Victor Girbu, Brad Gudger, and Stewart O’Callaghan provided updates on their research, including the European EDI survey that was launched earlier this year.

Acknowledging the critical gaps in the EU’s Beating Cancer Plan, Victor Girbu, Youth Cancer Europe patient advocate co-leading Work Package 5, emphasised the need to address diverse populations’ unique needs and barriers. “The EU’s Beating Cancer Plan acknowledges that major disparities exist between and within Member States. However, some critical gaps remain. For example, the plan notes differences in survival rates and access to screening programs, but does not sufficiently address diverse populations’ unique needs and barriers” stated Victor.

“The EU’s Beating Cancer Plan acknowledges that major disparities exist between and within Member States. However, some critical gaps remain. For example, the plan notes differences in survival rates and access to screening programs, but does not sufficiently address diverse populations’ unique needs and barriers”

Victor

Behind the Scenes of the EDI Toolkit Development

In the second part of the event, we engaged in multiple lively workshop sessions where we explored together the particular cultural, political, or social challenges and wrong assumptions we need to address in order to develop the Equity, Diversity, and Inclusion Training and Toolkits for the three distinct audiences of healthcare providers, researchers, and patient organisations.

We asked key questions like: 

  • What inclusion topics are not currently considered in healthcare?
  • What groups and communities experience challenges or oppression and what can we actively do about it?
  • How can cultural awareness best support inclusion in the healthcare setting and help provide care successfully in a given region?

We also took our time to discuss what matters to young people but often gets overlooked by older generations. 

We want to extend our gratitude to everyone who took part in the event – patient advocates, public health experts, healthcare providers, and researchers! A special shout out to all the panellists and the participants Emily Pattinson, Katie Rizvi, Razvan Chereches, Ruth Borgfjord, Delia Nicoară MD, Istvan Laszlo, Esraa Abdallah, Carmen Monge-Montero, Nisa Eszter Rizvi, Brad Gudger, Shajjad Rizvi, Anna Zettl, Johan De Munter, Oana Rusu, Hilda Hajdu, Laura Cristea,  April Dorenbosch, Erik Sturesson, Cristina Trifulescu, Nataliia Hrad, Victor Girbu, Karl-Smith Bryne, Hanna Ryzhkova. 

You can read more about our Round Table speakers and the topics we talked about. Plus, over here, you can check out the complete programme and general information about the event!

Learn more about the projects we are leading within EU-CAYAS-NET and about our participation in other EU-funded projects here.

To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.

Our remarkable project deserves an equally remarkable ending! 

Join us from 7 – 12 August 2024 in Cluj-Napoca, Romania, at the UNTOLD Festival for the grand finale of our EU-CAYAS-NET project! 

Young people aged 18 and above, living with or beyond cancer, are invited to register their Expression of Interest below for the chance to win a full pass ticket to UNTOLD, regardless of prior project participation.

  • Travel expenses and accommodation in student dorms are included.
  • While registration is open to the public, spots are limited. Selection will be made on a first come first served basis.

UNTOLD is one of Europe’s largest electronic music festivals and this edition will feature top artists like Martin Garrix, Sam Smith, Swedish House Mafia and Lenny Kravitz. Exclusive meet-and-greet opportunities will be arranged, offering some selected young cancer survivors the unique chance to go backstage, meet, talk, and engage with the artists.

The event is organised by Youth Cancer Europe and will gather all project participants and associated partners to celebrate the accomplishments of the two-year EU co-funded project. Topics of discussions and activities will include adolescent and young adult cancer care, mental health, quality of life, cancer survivorship, health equity, and more.

Let’s celebrate two years of hard work, dedication, and incredible achievements!

Learn more about the projects we are leading within EU-CAYAS-NET and about our participation in other EU-funded projects here.

To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.

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