Learning patient advocacy at the WECAN Academy

By Andie Miles

The WECAN Cancer Advocacy Academy 2024, held from 11th to 14th July in Barcelona, was a leading capacity-building event for cancer patient advocates. It provided a unique platform to combine deep learning with the power of in-person connections. Over these few days, attendees gained valuable knowledge and tools through a diverse programme covering key areas such as advocacy tools and skills, healthcare systems, policy and access, and research and data.

I am immensely grateful to Lydia from Fight Bladder Cancer for the nomination and to Alex at the World Bladder Cancer Patient Coalition for the opportunity to attend the WECAN Cancer Advocacy Academy 2024 in Barcelona.

The Workgroup of European Cancer Patient Advocacy Networks (WECAN) was established in 2015 when 15 umbrella cancer patient advocacy organisations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient community to share experiences and work together. Its formation stemmed from recognising the impact that such a collaboration could bring to the European cancer community and to their member organizations.

WECAN now brings together over 20 umbrella cancer patient advocacy organisations active in Europe. As WECAN grows, and new members join the network, there are further opportunities to be realised. Through learning from shared experiences and continued collaboration, WECAN continues to grow and present exciting opportunities for the cancer patient community.

The theme of this year’s WECAN Academy, “There is No Shortcut to Knowledge,” resonated deeply with me. Meeting so many individuals who have battled or are still battling cancer was an experience I will always treasure. Being among people who understand and accept our shared experiences without judgment created a sense of belonging. It felt liberating to just be myself, with all the physical and emotional scars left by bladder cancer, in a community that truly “gets it.”

The Academy fostered an electrifying atmosphere of shared purpose. The sessions included interactive workshops, insightful presentations, and engaging discussions led by patient experts and fellow advocates. These sessions equipped us with the latest cancer research and treatment advancements, effective patient advocacy strategies, healthcare system navigation skills, and ways to connect with our cancer patient community.

The WECAN Academy is dedicated to growing the next generation of leading patient advocates. The in-person format of the event facilitated opportunities to connect with fellow advocates, exchange ideas and experiences, form lasting partnerships, and build a supportive community. Together, we can amplify our collective voices and make a significant impact on the lives of those affected by cancer.

The WECAN SmartStart program is designed for those new to advocacy, providing them with essential knowledge and skills to embark on their advocacy journey effectively. I was honoured to be part of this program, which is at the heart of WECAN’s mission to bolster the capabilities of patient advocates and experts, fostering a vibrant community of activists capable of propelling transformative advancements in healthcare, particularly in cancer care. The WECAN Academy 2024 aligns perfectly with this mission, serving as a platform for learning, collaboration, and empowerment.

The knowledge sessions at the Academy were led by experts across various fields. The discussions often linked back to my previous career in the NHS, working within the mental health sector, which included older adult care and nurse education. This connection was profoundly evocative for me, reminding me of my sense of purpose and igniting a renewed passion for advocacy work. From patient and carer advocates sharing personal experiences to professionals like Lydia and Alex from the World Bladder Cancer Patient Coalition, the sessions were thought-provoking and deeply engaging.

Alex from the World Bladder Cancer Patient Coalition said “It was a privilege to welcome our largest bladder cancer patient advocates cohort to the WECAN Academy 2024. Existing and new connections forged amongst peers from Fight Bladder Cancer , France and Italy were beautiful to witness. As part of the Programme Committee I was honoured to share my professional experience as patient advocate across different domains of intense four-day agenda focused on Advocacy Tools and Skills, Research and Data and Healthcare Systems, Policy and Access. There is so much collective knowledge in cancer patient community across Europe, and it was a privilege to guide and facilitate those exchanges and practical applications of knowledge gained. Whilst standing facing 80+ dedicated patient advocates I felt the commitment and truly inspiring desire to help others. WECAN Academy is an incredible platform for all of us to build up our skills, knowledge and confidence to go out into the world and make a lasting difference for all people affected by bladder cancer.”

I also want to mention Melanie, who has been a vibrant and active participant at various events, including the reception at the Houses of Parliament and the WECAN Academy. Melanie’s motivation and encouragement embody the welcoming and supportive spirit of Fight Bladder Cancer.

Melanie from Fight Bladder Cancer said: “It’s not often that a group of cancer patients get together in such a way, upbeat, positive, and full of thoughts and ideas!

At the WECAN Masterclass, I picked up many crucial tips on promoting culturally sensitive care, how important it is to understand and respect different cultural backgrounds and how they can affect patient experiences and healthcare needs.

I learned some communication strategies that will help us to make sure our educational materials and support services are accessible and relevant to everyone. I also found out how to push for diverse representation in healthcare teams to better meet the cultural needs of the bladder cancer community. By ensuring we use these practices at Fight Bladder Cancer, we can continue to make our support more inclusive and effective, ensuring all patients get respectful, personalised care.”

Meeting face to face with Sarah and Alessandro from our sister organisations, Bladder Cancer France (Cancer Vessie France) and Bladder Cancer Italy (Associazione Palinuro), was fantastic! It really broadened my perspectives and brought us all closer together. These personal connections boosted my enthusiasm and commitment to pushing bladder cancer advocacy and support to the next level.