Research

Cancer Advocacy Network Comparison of Experience Research Survey

The need

Studies show that without ensuring an optimal patient experience, improvements in health and well-being are limited. As a result, Patient Experience Data (PED) has gained increasing importance in drug development, regulatory decisions, and health technology assessments; bearing in mind the continuum of care.

While PED is collected among various cancer types, there is a lack of consistent and standardised data collection, making the comparison of patient experiences across cancer types ineffective. This, in turn, leads to an inability of identifying best practices of care and equitable care provision across different cancer types.

The solution

The CANCERSurvey is a cross-sectional, pan-European survey study, aiming to gather and compare PED on the cancer patient pathway, from the moment of diagnosis to treatment, care, quality of care, communication, support, and life post-treatment. The study results in comparable evidence across multiple disease areas in cancer.

Pan-European project based on the WECAN network

Representing 23 overarching cancer types

Collecting Patient Experience Data along the care pathway

Empowering patient organisations to advocate for improvements in cancer care pathways

PATIENT EXPERIENCE DATA (PED) ALONG THE CANCER PATIENT PATHWAY

WECAN initiated a collaborative effort to develop the CANCERSurvey, a project aiming to gather cancer patient experiences, including those post-treatment, across cancer types. Consistent data collection across different cancer types will inform cross-cancer and cross-country comparisons, enabling the identification of best practices, as well as healthcare policies and treatment approaches that do not necessarily meet patients’ needs. While many cancer patient organisations have conducted patient experience surveys, some cancer types and patient populations remain underrepresented, or PED remains underutilised. The project’s objectives are to:

Develop and distribute a pan-European survey on cancer patient experiences

Collect and compare cancer patient experiences across multiple disease areas in cancer

Develop community, and disease-specific conclusions

Inform different stakeholders with the study results

Use acquired data as foundation for advocacy work

Project Overview

Scope

WECAN has 23 affiliate organisations, each of them being an umbrella organisation. Together, they represent close to 900 patient organisations. WECAN’s reach is estimated at 10,000 patients within Europe. To allow for geographically diverse participation, the survey will be made available in 15 languages.

Cancer types covered:

Acute leukaemia	Hereditary cancers	Neuro-endocrine cancer
Bladder cancer	Kidney cancer	Paediatric cancers
Brain tumours	Lung cancer	Pancreatic cancer
Breast cancer	Lymphomas	Prostate cancer
Cancer of unknown primary	Melanoma	Rare cancers
Chronic lymphocytic leukaemia	Myelodysplastic syndrome	Sarcoma
Digestive cancers	Myeloproliferative neoplasms

Timeline

The project is divided into four Streams and expected to last until mid-2027:

Stream 1: Literature review, survey design, and preparation for distribution in 15 languages

Stream 2: Online survey distribution to target audience

Stream 3: Data analysis and reporting

Stream 4: Scientific dissemination, advocacy support, and the development of a sustainable continuation plan

Objectives

The project’s objectives are to:

Ensure consistent, standardised, and robust Patient Experience Data (PED) across different cancer types and European countries.

Empower patient organisations to use the CANCERSurvey findings to advocate for improvements in cancer care pathways.

Provide valuable insights to stakeholders across the healthcare ecosystem – including medical professionals, policy makers, regulators, HTA bodies, and the pharmaceutical industry – on current practices and inequalities in cancer care.

By meeting these objectives, the CANCERSurvey can create a lasting impact on cancer care across Europe.

Governance

The CANCERSurvey project is executed by the European Patient Advocacy Institute (EPAI) gUG on behalf of WECAN. In the execution, EPAI is collaborating with Picker, an international health research charity.

To ensure diverse representation in the design, data collection, and interpretation of study findings, WECAN’s 23 affiliate patient organisations are collaborating closely. Their strategic involvement provides the opportunity to capture data that is representative for each cancer type.

The patient community provides the ultimate oversight and governance of the project. A Steering Committee comprising of WECAN affiliate members provides input, scrutiny, decision-making, review and assurance during the course of this project.

PROJECT NEWS

How Cancer Patient Advocates Ideated a Survey

Paula Capparelli2025-12-17T11:06:42+01:00August 27th, 2024|

Supporters

Support for the study was provided by the following industry partners. These supporters were able to offer input and suggestions, while the Steering Committee retained final decision-making authority to ensure alignment with patient needs.