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Dear SPAGN Members and Friends,
As part of our involvement with WECAN - The Network of Cancer Patient Organisations in Europe, we would like to share an update on the WECAN CANCERSurvey, a pan-European initiative looking at the experiences of people affected by cancer across different cancer types.
The survey has been developed to address an important gap: patient experience data is often collected differently across countries and cancer types, making it difficult to compare experiences and identify where improvements are needed.
The CANCERSurvey aims to bring these experiences together in a more consistent way, creating comparable evidence that can help inform advocacy, healthcare policy, and decision-making.
SPAGN Board of Directors & Team
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| 🌍 Understanding the Patient Experience Across Europe |
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The CANCERSurvey is a cross-sectional, pan-European Patient Experience Data (PED) study that gathers and compares cancer patient experiences across cancer types - from diagnosis through treatment, quality of care, communication, support, and life post-treatment. Inconsistent and non-standardised patient experience data across cancer types has limited the identification of best practices and equitable care provision.
The CANCERSurvey addresses this gap by producing cross-cancer, cross-country comparable evidence that can inform policy, regulation, and healthcare decision-making.
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- Produces standardised, cross-country comparable PED to support evidence-based policy decisions
- Identifies inequalities in cancer care pathways across Europe
- Informs HTA bodies, regulators, and health system planners with real-world patient evidence
- Covers the full continuum of care: diagnosis, treatment, quality of care, and survivorship Results will be actively used for advocacy at European and national level by patient organisations
- Findings will be published in a peer-reviewed journal and disseminated to stakeholders across the healthcare ecosyst
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| 🎗️ Sarcoma Is One of the 23 Cancer Types Covered |
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The other cancer groups covered include blood/haematological cancers, brain/CNS and spinal cord cancers, breast, cancer of unknown primary, endocrine and neuroendocrine, gastrointestinal, genitourinary, gynaecological, head and neck, lung/chest, and skin cancers.
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| How Is the Project Governed? 🤝 |
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The CANCERSurvey is executed by the European Patient Advocacy Institute (EPAI) on behalf of WECAN, in collaboration with Picker, an international health research charity.
A Steering Committee of WECAN affiliate representatives provides input, review, and oversight throughout the project, ensuring patient governance and representativeness across all 23 cancer types.
The study is supported by industry partners Autolus, AstraZeneca, Bayer, Boehringer Ingelheim, Daiichi-Sankyo, Johnson & Johnson, and Roche. These supporters are able to offer input and suggestions, while the Steering Committee retains final decision-making authority to ensure alignment with patient needs.
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- Stream 1: Literature review, survey design & translation into 15 languages
- Stream 2: Pan-European online survey distribution
- Stream 3: Data analysis and reporting
- Stream 4: Scientific dissemination, advocacy support & sustainability plan
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Follow us on our Whatsapp Channel! Join here!
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Sarcoma Patient Advocacy Global Network e.V./Assoc.,
Untergasse 36,
61200 Wölfersheim/Germany
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