Author: Michael Prattes

This article is 179 words and a one-minute read.

How can Europe ensure that patients, caregivers and healthcare professionals have access to clear, trustworthy and accessible cancer information?

These questions will be at the centre of the next stakeholder forum for the EU-CIP project, bringing together patients, healthcare professionals, policymakers and digital health experts to review the ongoing development of the EU-CiP project.

The forum will take place on 16 April and will provide an opportunity to learn more about the project and to engage directly in shaping its future direction. Through interactive breakout sessions for different audiences (ranging from policymakers to patient advocates to clinicians), participants will be invited to share perspectives on how digital tools can support patient empowerment, improve access to reliable information and strengthen communication between patients and healthcare professionals across the cancer journey.

The outcomes of these discussions will be shared in a plenary session and will inform the project’s ongoing stakeholder overall engagement, outreach and policy work.

Find more details about the event and register here on the main article on the website of the European Cancer Organisation (ECO).

This article is 387 words and a two-minute read.

With the beginning of March, not only does winter end, but we at EU-CiP begin broadly sharing our project and collecting feedback from relevant stakeholders. This is key to building a portal that closely meets the needs of users for helpful and reliable cancer information. With this mission, Harald Wagener from BIH@Charité visited Brussels for no less than four cancer events designed to connect.

2nd of March started with a half day event hosted by DG RTD: The 5th workshop of the EU Cancer Mission dialogue with AYA (Adolescents and Young Adults) patients. Here, Harald  presented EU-CIP as one of seven projects and connected with representatives from PEARL, MAYA, PanCare4AYA, PredictAYA, TranscendXR and YARN. The dialogue with AYA workshops started as part of the EU Cancer Mission’s citizens engagement activities and launched an ongoing dialogue with young cancer survivors to better understand the specific needs and challenges faced during and after treatment.

This goal was shared by the participants of the EU Cancer Mission Quality of Life (AYA) Cluster Kick-off Meeting on 3 March. The QoL (Aya) cluster is a collaboration of Horizon Europe projects that work together to improve the quality of life of adolescents and young adults dealing with cancer. The cluster addresses long-term consequences of cancer and its treatment. This is particularly relevant for young patients and survivors as it can strongly impact physical and mental well-being throughout their lives.

Representing EU-CiP, Harald was also invited as panelist at the #EUHPP Live Webinar on „Cancer Mission Quality of Life (Patient Centered Care and Adolescent Young Adult). This webinar brought together stakeholder and citizen perspectives on research and innovation to provide an early exposure to the cluster projects launched under the Cancer Mission.

Final stop on this tour was the ECHoS business lunch where Harald met the friendly faces of the ECHoS project. ECHoS sets the foundations for the creation of a future European Network of National Cancer Mission Hubs (NCMHs) with the ambition to be a strong and cohesive network aligned with the EU Mission: Cancer and Europe’s Beating Cancer Plan (EBCP).

While we are building the EU Cancer Information Portal we look forward to connecting with many more people and initiatives along the way. Getting input and advice from our diverse stakeholders helps us tailor the portal to the needs of the users. EU-CIP will thus continue in the spirit of the ECPDC operational study’s First Tenet: Patients first.

This article has 828 words and is a four-minute read.

“It is not the voice of one institution, but the outcome of a collective European dialogue” – Prof. Celia Belim

Defining robust quality criteria for cancer information

The purpose of the European Cancer information Portal is to provide citizens with equal access to reliable, evidence-based cancer information in multiple languages. To achieve this, a dedicated team of experts is developing a set of clearly defined quality criteria and standards for accurate, trustworthy and user-friendly content. This article explores the implementation of a Delphi panel in this process – a structured communication approach that involves a panel of selected experts. We covered the role of patients and patient representatives in defining the quality criteria in this recent article here.

At this stage the team already generated a preliminary catalogue of quality criteria comprising 20 main criteria and 80 sub-criteria. These criteria will be iteratively refined involving researchers and patient representatives. Such a set of quality criteria is a first for Europe and can be used by other digital platforms in Europe and beyond. For EU-CiP, these standards guide the work of project partners in identifying and evaluating information sources that feed into the portal.

At some point in our lives, most of us will be affected by cancer – either directly or experienced by loved ones. Cancer incidences are rising all over Europe with a projected number of 3.25 Million new incidences per year in 2040. Not knowing where to find trustworthy guidance on cancer prevention, diagnosis, treatment and support can cause additional stress in an already life-changing situation. The vast number of information sources we are confronted with, further complicate the search for trustworthy information.

The EU-CiP project is building a European Cancer information Portal (EU-CiP) that will be a digital home for reliable, easy-to-access cancer information for citizens across Europe. By providing information addressing all stages of a person’s cancer journey in one place, the portal will empower patients, caregivers, families and friends to make informed decisions about their life and health. This reflects EU-CiP’s commitment to improving the quality of life for everyone affected by cancer.

Delphi Panel

Developing quality criteria for the information presented on the portal follows a clear, inclusive strategy. The process follows several steps including a review of scientific literature, the establishment of a Delphi panel, and, critically, focus group and survey input from patient organisations.

The EU-CiP Quality Criteria Delphi panel comprises 71 experts from across Europe. The panel was established with strong support from the consortium partners who shared invitations through their networks and took part themselves. Based on results from focus groups and surveys, the experts on the Delphi Panel will iteratively refine the quality criteria in up to three Delphi rounds over four months.

The panel includes experts in communication, digital and eHealth technologies, ethics, health literacy, health policy and public health, medical and health sciences (including oncology) and social sciences and humanities. This reflects the various aspects that need to be considered when building a portal that meets the needs of the users.

The challenge in this process is to integrate diverse voices into a common set of recognised quality standards. This is where the Delphi panel plays a key role by providing a structured approach, as Prof. Belim describes:

“The Delphi panel is the moment when everything comes together. What began as a wide and diverse collection of voices – from patients, researchers, clinicians and European partners – is being gradually distilled into a shared set of quality standards that experts can recognise as legitimate.

“Through anonymous rounds and structured feedback, participants are able to reflect freely, challenge assumptions and move towards real consensus. This is what is giving the framework its authority: it is not the voice of one institution, but the outcome of a collective European dialogue.”

The Delphi method is particularly appropriate for developing quality criteria with European policy and normative relevance. By using anonymous and structured feedback, it promotes equity of voices, supports independent reflection and enhances balanced expert judgement. Participation in all rounds is essential to ensure the final criteria are robust, legitimate and valid.

In fact, the strength of the Delphi panel – as Prof. Vaz de Almeida notes – lies in its ability to build shared standards through collective agreement:

“In a field as sensitive as cancer information, consensus cannot be imposed – it has to be built. The Delphi panel is allowing us to bring together different disciplines, countries and perspectives and to progressively transform them into common ground. What is emerging is more than a technical model; it is a European reference for trustworthy, ethical and human-centred cancer information.”

Clear quality criteria for cancer information represent one of the fundamental building blocks of 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).

Further reading:

‘Compassionate, accessible and real’: How patients are defining the EU Cancer information Portal

This article has 716 words and is a three-minute read.

“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).

Joint statement from UNCAN-Connect, CANDLE and EU-CIP

This article is 523 words and a three-minute read.

The European Commission has established two digital flagship projects under Europe’s Beating Cancer Plan and the EU Cancer Mission: UNCAN.eu and the European Cancer Patient Digital Center (ECPDC).

The two platforms are designed to be interlinked in National Cancer Data Nodes (NCDNs), with the goal of ensuring cancer data interoperability between member states. In December 2024, three European projects under the Horizon Europe programme were funded to support this ambitious undertaking: namely UNCAN-Connect, EU-CIP and CANDLE.

The Commission has set up a specific Working Group under the Directorate-General for Health & Food Safety (DG SANTE), tasked with aligning on the core functions of NCDNs and ensuring coordination between the UNCAN.eu central platform and the ECPDC. The Working Group, named eCancer Working Group, is composed of national representatives nominated by respective ministries to reflect the specific needs of the different member states.

On Feb 10, the eCancer Working Group has published its recommendations on implementing the UNCAN.eu and the ECPDC platforms. The report sets out key governance, financing and implementation conditions required to make these platforms operational and sustainable across member states, in alignment with the European Health Data Space (EHDS).

The coordination teams of UNCAN-Connect, CANDLE and EU-CIP, on behalf of their respective consortia, welcome the publication of the eCancer Working Group paper and its comprehensive recommendations on the core functions, future governance and use of cancer data in Europe.

The report highlights that the success of both UNCAN.eu and the European Cancer Patient Digital Centre will depend on strong user-facing functions, clear governance structures, strong political commitment from member states, sustainable funding models and close coordination across all stakeholders involved. It emphasises synergies between existing digital assets, ensuring legal clarity in the designation of national entities, and supporting capacity building at national level. These cross-cutting recommendations are directly relevant to ongoing implementation work across multiple Cancer Mission projects.

• UNCAN-Connect contributes to the development of the UNCAN.eu central platform, supporting data sharing and interoperability across national cancer research ecosystems.
• EU-CIP is advancing the implementation of the European Cancer Patient Digital Centre information portal, with a strong emphasis on quality, accessibility and patient empowerment.
• CANDLE works with member states to develop NCDNs in alignment with implementation at the various national levels of the EHDS.

Taken together, these projects reflect a shared commitment to building a coherent European cancer data ecosystem that integrates research, care and patient engagement. The eCancer Working Group recommendations provide a common strategic reference point that reinforces the importance of coordination across projects, alignment with the European Health Data Space, and sustained pan-European investment. The consortia remain committed to continued dialogue with member states and to work closely with European institutions and the wider cancer community, with the aim of translating these recommendations into concrete, patient-centred solutions. This position paper serves as a benchmark in aligning the development of digital infrastructures in other potential clinical settings and domains.

Citation:

European Commission: Directorate-General for Research and Innovation, ECancer working group recommendations – Implementing the UNCAN.eu Network and the European cancer patient digital centre, Publications Office of the European Union, 2026, https://data.europa.eu/doi/10.2777/8011798