The essential role of patient expertise in improving the cancer journey

To promote dialogue, transdisciplinary and common action, Association Savoir Patient (ASAP) in Geneva, Switzerland, systematically puts together patients and professionals. ASAP has set up throughout the years countless working groups, joint commissions, conferences, roundtables, symposia covering a variety of subjects, such as psycho-oncology, adverse effects – cancer rehabilitation – integrative health, intimacy and sexuality, professional integration, family issues, body changes and image.

The success met each time proves the need, both on the patient side and on the professional side, for such meetings, for such platforms. The need to communicate, share, reflect together is essential for improving the care pathway and quality of life.

This is precisely the mission that Association Savoir Patient has set itself. A non-profit public-interest NGO, ASAP promotes the recognition and integration of patients' expertise and knowledge.

Association Savoir Patient hosts several structures, including the Breast Cancer Network, a working group bringing together patients, professionals and institutions. Created in 2001, this Network aims to reduce the impact of breast cancer and its treatments on patients and their loved ones’ lives. Achievements include the “breast cancer awareness” month campaigns, the first breast cancer nurse position in Switzerland, the implementation of a physiotherapeutic care procedure, the Logbook© toolkit, the Adverse Effects Observatory database, the Adverse Effects thematic newsletters, different forms of peer-to-peer support, empowerment and capacity building.

Since 2012, ASAP and the University of Geneva and its Faculty of Medicine have signed a collaboration agreement for expertise, teaching and research. ASAP’s Patients Committee has been involved in the design of various research projects with the Geneva Cancer Registry, such the Veronique Study on risk factors for breast cancer among women under 40.

ASAP has developed a close collaboration with UICC in the past: coaching empowerment and capacity building of the Eastern Europe patient associations, presenting its traveling exhibition “Breast Cancer: Testimonies”, the film “Breast Cancer: Women Voices” and co-creating the Reel’s Lives Film Festival, during the 2008 World Cancer Congress in Geneva.

As part of World Cancer Day, on 4 February 2023, Association Savoir Patient carried out, together with three other Geneva associations – the Geneva League against Cancer, ESCA Cancer Support, the Otium Centers –, a participatory event whose aim was to give voice to patients and families. Acclaimed by both professionals and patients, the event allowed several essential proposals to emerge, such as: the creation of a one-stop-shop information desk, the “droit à l’oubli” (the right of not declaring one’s cancer five years after diagnosis), and a task force on the societal perception of cancer patients.

Building on the success of the first edition and convinced of the importance of such meetings, ASAP and partnering associations shall renew for 2024 a similar event on World Cancer Day. Only by bringing out concerns and hearing patients' proposals can we improve the relevance of and access to quality care for everyone affected by cancer.

People facing with cancer and “survivors” are each year more numerous. We must join forces and commit to ensuring that cancer will no longer be a burden on them and their loved ones, that they are fully integrated in society, receive all the support they need, and don’t suffer discrimination of any kind.