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“Quality cancer information is not only about facts, but about feeling supported, respected and understood” – Prof. Cristina Vaz de Almeida
A fundamental pillar of the EU-CiP project is the involvement of patients and patient organisations at every step of the process. In this early, formative phase of the project, their voices are central to shaping the portal to ensure that it meets the needs of the users. This article highlights how patients play a crucial role in helping define quality criteria that will guide the selection and presentation of cancer information on the portal. Part two of this story, describing how a dedicated panel of experts builds on the insights of the patients, will be published here next week.
When someone is affected by cancer, not knowing where to find reliable and easy-to-understand information can invoke additional fear and stress. Patients and their families are often confronted with either unreliable sources or information that is not presented in an easy-to-understand language. The EU-CiP project will tackle both hurdles by providing trustworthy, evidence-based information presented in accessible language and supported by graphics and videos. A critical point raised by patient representatives in the project was the need to include emotional and quality of life support, rather than focusing solely on information. Prof. Cristina Vaz de Almeida (SPLS), who is coordinating the team leading quality criteria work, highlights:
“Listening to patients and survivors changed the project. They told us that quality cancer information is not only about facts, but about feeling supported, respected and understood. That insight pushed us to strengthen the emotional and human dimensions of the criteria. Without these voices, the framework would never be complete.”
Focus Groups
The quality criteria are being developed by a dedicated team of experts together with patient representatives. The process includes a comprehensive review of scientific literature, the organisation of focus groups, the administration of surveys and the integration of insights from a Delphi panel which will be in the focus of part two of this story.
Four focus groups with diverse European cancer patients and survivors, held between September and October 2025, provided their unique experiences as patients. In this way, quality shifts from a concept to lived experience, as Prof. Célia Belim, Senior Researcher at SPLS, explains:
“The focus groups reminded us why this work matters. When people speak about their fears, doubts and hopes, quality stops being an abstract concept and becomes something deeply human. Participants showed us that information must be accurate, but also compassionate, accessible and real. Their stories shaped the heart of the framework.”
As a result, this area was reinforced within the quality criteria. An additional five consultants are ensuring it is properly addressed within the EU-CIP project.
Online Survey
To gather broader and representative patient input, a comprehensive online survey was launched using insights from the focus groups. The survey was made available in seven languages (English, French, Lithuanian, Portuguese, Spanish, Swedish and Ukrainian), ensuring access for diverse European audiences. The distribution was managed by multiple members of the EU-CiP consortium: the Portuguese Society of Health Literacy (SPLS), the Lithuanian Cancer Patient Coalition (POLA) and Skåne University Hospital Comprehensive Cancer Centre, Sweden (NMC).
Administering the survey in seven languages helped gather perspectives from different European countries in a consistent way. As emphasised by Prof. Belim:
“It showed us, very clearly, that quality is not just about being scientifically correct, but about being understandable, useful, transparent and emotionally respectful. These responses gave the framework a strong social and empirical foundation.”
The response was powerful: After two months (in December 2025), 457 replies – far outstripping expectations – had been received from across Europe. This response provided solid data to refine the quality criteria in the ongoing Delphi Panel process. Prof. Vaz de Almeida explains the significance of this response and why it is so important:
“Numbers matter, but what truly matters is what they represent. Behind every response is a person trying to make sense of cancer information. The survey confirmed that trust is built through evidence, clarity and openness, but also through sensitivity and inclusion. This is what turns data into guidance and research into impact.”
Learn more about EU-CiP
Clear quality criteria for cancer information are one of the fundamental building blocks for the EU Cancer information Portal. Explore more about how we build the portal here and follow us on our socials for updates (LinkedIn, Facebook, Instagram, Bluesky, Threads).
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