Program Name: The CANCERSurvey (Cancer Advocacy Network Comparison of Experience Research Survey)
Organizer
The WECAN Foundation (a pan-European network of 23 umbrella cancer patient advocacy organisations, representing nearly 900 patient groups and an estimated reach of 10,000 patients in Europe). The study is executed by the European Patient Advocacy Institute (EPAI) in collaboration with Picker, an international health research charity
What is it?
A first-of-its-kind, independent, pan-European survey designed to gather and standardise Patient Experience Data (PED) across multiple cancer types. While many patient organisations collect experience data, current collections are fragmented and inconsistent.
This survey provides a unified, standardised framework to capture the real-life experiences of individuals along their entire cancer pathway—from first symptoms and diagnosis to treatment, care, communication, daily life impact, and long-term survivorship.
What will the data be used for?
The resulting data will serve as a robust, comparable evidence base to:
- Identify inequalities and best practices across different countries and disease areas.
- Inform medical professionals, policymakers, regulatory bodies, and Health Technology Assessment (HTA) agencies about unmet patient needs.
- Provide local patient organisations with solid data foundations to support evidence-based advocacy work.
Who is the survey designed for?
- Anyone diagnosed with cancer as an adult (aged 18+) in Europe.
- Carers of adult cancer patients in Europe.
Geographic eligibility
- Geographical Europe.
Available Languages
- To ensure diverse and equitable participation, the survey is available in 15 languages (including English, Spanish, French, German, Italian, Portuguese, and more).
Time Commitment
- Approximately 25 minutes to complete.
Participation Deadline
- 16 November 2026.
How to Support and Distribute (For Advocates & Organisations) WECAN is actively looking for local cancer centres, patient organisations, and advocates to distribute the survey to patients outside major advocacy networks. A full distribution toolkit with ready-to-use communication templates, graphics, and social media assets is available in their Google Drive.
Direct Contact for Partners: cancersurvey@wecanadvocate.eu.
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