YCE Leadership Summit lands in Budapest - Youth Cancer Europe (YCE)

In July 2019, 80 participants representing 31 countries across all of Europe gathered in the stunning Hungarian capital of Budapest, to take part in Youth Cancer Europe’s first ever Leadership Summit!

Over the course of two days of presentations, panel discussions and a host of activities specially put together for the patient advocates, we shaped and put together the agenda and specific actions to steer the future of cancer treatment and after-care for young people affected around the continent.

Check out the highlights from the Summit below!

Following opening remarks by our co-founders Katie Rizvi and Sarunas Narbutas, the morning sessions for Day 1 focused on an introduction to YCE, its mission statement and a recap of the five key issues included in our white paper, which was launched last year at the European Parliament. This was followed by updates on policy work in Belgium (Ghislaine Bogers), Lithuania (Sarunas N.) and the UK (Bradley Gudger) as a direct result to our white paper launch, with patients from other countries engaging in direct discussion about financial discrimation against cancer patients and survivors – the first of the five issues presented as part of this launch.

This was followed by a session on the issues faced by non-European cancer patients living in the EU, with a case study from Carmen Monge from Costa Rica.

Roche’s Sarah Buckley presented FutureProofing Healthcare, a sustainability index which measures every EU member state’s performance based on five vital signs: access, health status, innovation, quality and resilience. While 79% of the attendees agreed in the live slido poll that having trustworthy metrics mapping the individual healthcare systems’ performance is one of the most important tools for patient advocates, the group pointed out that some metrics looking at quality of life and quality of care delivery were not adequately captured.

After a short presentation on the use of social media by adolescents and young adults (AYA) with cancer by Eva de Clercq from the University of Basel, our pitch competition saw six digital health solutions presented for cancer patients, which included WarOnCancer (a social media app based on storytelling), VIA (a peer-to-peer help tool for patients over 18), Alike (an app from a new charity founded to combat isolation and loneliness among young people with cancer), Andaman7 (focused on patient-facing personal health records), Untire (an NHS-approved app that helps patients to manage cancer-related fatigue), ExerciseMD (a user-ready cardiovascular exercise app focused on short activities that fit around what a patient likes to do). Each app was put under the microscope by our engaged audience of cancer patients and survivors discussing the ins and outs of what they can do, concerns around data privacy and how to further improve them.

The day was wrapped up with a beautiful dinner at the stunning Fisherman’s Bastion in Buda Castle!

The sessions for Day 2 began with a discussion on European cancer patient networks and how the last two years have seen a tremendous change in the way patient advocates have become part of the discussion in key oncology conferences around Europe and beyond. It also highlighted the way YCE works alongside other patient organisations on a daily basis and how this united front helps to further the cause for young cancer patients and survivors.

Further discussions on Day 2 included highly engaging sessions on health literacy and digital health, prefaced by a presentation by Hernani Oliveria (Portugal), attendee and cancer patient advocate’s PhD topic, leading to a look into patient-led resources such as a future wiki for cancer-related information, nutrition, exercise and managing co-morbidities discussed by Elzbieta Zawislak and Herve Lamarque from Incyte. Patients and survivors alike agreed on the importance of co-creating such an information platform and suggested, for example, including key aspects such as information on clinical trials.

From here, the discussion moved into how to evolve patient data collection and how to integrate it into clinical decision making, ahead of a session dedicated to the importance of cross-border healthcare with an impacting case study from Portugal’s Mariana Coutinho, which highlighted the pitfalls in the disparities of cancer treatment from country to country, even within the European Union, and how issues such as poor communication with doctors and health specialists, lack of information about directives, corruption and the state of local and regional economies affect this.

Subsequent discussions went into further detail about our presence at the European Parliament before discussing ideas for future summits and the possibility of a global meeting for youth with cancer in 2021.

All in all, we couldn’t have been happier with how our first summit went – we came inspired and geared up to drive change at a local, national and international level, coordinating the efforts of patients and survivors across the continent and with ideas firmly planted for further meetings and the key steps for the future of youth cancer treatment and after-care taking shape.

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You can also view and download all the presentations from the summit here.

Check out the full programme for the event and also the practical guide we put together for all attendees.