The EU-CIP project
The goal of this project is to build EUropean Cancer Information Portals (EU-CiPs) which will provide reliable and easy-to-access cancer information for citizens in Europe. This will help people find information they need and make informed decisions about their life and healthcare.
Cancer can affect everyone, either directly or by affecting a loved person.The EU-CiP project will create a home for information about prevention, diagnosis, treatment and everything else related to cancer. We want to reach patients, their caretakers, families, friends and everyone who might be confronted with cancer during their life.
EU-CiP strives to enhance the overall quality of life for all those affected by cancer throughout their entire journey.
Why we need EU-CiP
Not knowing where to find reliable and easy-to-understand cancer information can invoke additional fear and stress. At the moment, a comprehensive source for this kind of information is missing.
- Patients and survivors often search for information by general search engines and can be overwhelmed with unstructured, potentially unreliable information.
- Evidence-based information on cancer is rarely presented in an easy-to-understand form and does not consider the individuals‘ context.
- Most funded research or infrastructure projects address researchers, excluding the patient journey or Quality of Life aspects and lack in sustainability beyond the funded timeline.
Main objectives
- For patients with cancer, survivors, relatives and caregivers: Improve access to information about all topics relevant to cancer. Presentation in an easy-to-understand form will help develop health and digital literacy based on evidence-based sources.
- On national/regional and European levels: Create a standard federated infrastructure based on national and regional cancer nodes to reduce inequalities within and between European countries.
- In the EU health environment: Integrate EU-CiP and ensure its sustainability.
Expected Outcomes
- Patients First: Improve the information base of patients with cancer, survivors, relatives and caregivers with regard to all topics relevant to the cancer entities selected.
- Provide easy-to-understand content on cancer addressing people with varying health literacy.
- Develop a more efficient approach to build national CiPs for Member States through a collaborative network approach.
- Build an EU-CIP Library of Contents as knowledge base for CiPs.
- Enhance patient care and reduce inequalities across Europe.
How the EU-CIP project works
Our ambition is to build an EU-CiP Library of Contents that serves as basis for 11 national and regional CiPs. These portals will give patients, survivors, their families and caregivers access to trustworthy information and comprehensive, tailored, and up-to-date guidance.
The project builds on a highly interdisciplinary network of partners that cover all aspects ranging from the technological realisation of the portals, a best-practise approach to content generation and evaluation as well as ethical aspects.
Putting patients first, means involving them early on and throughout the whole project to ensure that their needs are met.
The EU-CIP partners and their roles
A total of 40 partners from 18 European countries work together in this project to build the European Cancer Information portals. This reflects the value and need of providing citizens with reliable information in a way that it is easily understandable. The EU-CIP partners bring expertise from areas like Cancer Research, Patient Engagement / Advocacy, Health Literacy, and many more. Explore the partner profiles.
Content Creation and Editorial Workflow
The Content Creation Group will make use of existing information from various existing sources to create easy-to-understand, evidence-based information. These sources include participating Cancer Information Services (e.g., by the DKFZ), guidelines, the Knowledge Centre on Cancer (KCC).
The information will cover all stages of a patient’s journey from diagnosis, treatment options, rehabilitation, management of recurrence to palliative care. The Content Creation Group will use the AI-tools created in the project to provide input to the Content Editorial Board (see below) and will integrate its feedback after review.
The Content Editorial Board will uphold the quality, accuracy, and relevance of the presented information. The board is responsible for reviewing the content created by the Content Creation Group to ensure that it is correct and presented in a clear, concise, and easily understandable manner tailored to the specific needs of cancer patients, survivors, and caregivers.
Technology
The EU-CiP technical infrastructure will serve as the foundation of the ECPDC (see below). It will lay the groundwork for a scalable, flexible, and interoperable information portal that can serve the diverse needs of reliable, evidence-based information in lay-term language across Europe.
A comprehensive technical architecture for the EU-CIP will include a common Library of Content. This library will contain guideline-based information to be used and iterated by the Member States to match the information provided with their national and regional health care systems. Content generation is facilitated and managed by a suited Content Management System. This way, efforts by Member States and their participating partners can be reduced due to synergies in a co-creation process for the content.
Pilot and Roll-out
The EU-CiP pilot will be conducted in Lithuania where the first Cancer Information Portal prototype will be established. It will consist of a pilot website which includes a good practice navigational structure and design to illustrate the content in the local language. The roll-out partner will benefit from lessons learned, good practice implementation solutions, tools and templates for their implementing solution. In a second step, a consortium of experts from multiple European countries will collaborate to implement portals in various national languages, ensuring broad accessibility and relevance across the Union. The design and implementation steps will be supervised by patient experts to ensure that the components and contents meet the requirements and needs of the patients.
Social Sciences and Humanities, Ethics, Outreach and Dissemination
Providing evidence-based information in easy-to-understand language needs tight integration of expertise from medical research, information technology development, health communication, social sciences, healthcare systems and patient advocacy..
Social sciences and humanities (SSH) play a central role in the EU-CIP project as they address challenges of health literacy promotion, patient empowerment, and information accessibility. This ensures that the portals meet the informational and psychosocial needs of cancer patients and their families with diverse backgrounds.
A separate work package coordinates the ethics requirements in the project, a crucial aspect as the portals will address people in challenging and vulnerable circumstances. As the users’ trust is crucial, processes need to be set up in a transparent and responsible manner.
Governance structure
The project work is facilitated by a steering board and an ethics advisory board to include external expertise and guidance.
The bigger picture
The Cancer Info Portals are part of a larger vision to support citizens dealing with Cancer. ECPDC is short for “European Cancer Patient Digital Center” and the ECPDC house visualises this strategy as a building with multiple stories that represent different services and levels of engagement for the patients. The Cancer Info Portals, built in the EU-CiP project are a fundamental first step.
Working toward a healthy future
As one of the biggest medical challenges of our times, many efforts are focused on understanding cancer with all its variations and find the best possible options for treatment and care. EU-CIP partners up with related EU-funded cancer projects like CANDLE or UNCAN connect to generate the most benefit for society together. Overall these projects are part of EU-wide long-term strategies. You can find more information here:
Latest project news
- Published: BIH – Berlin Institute of Health @Charité press release on EU-CiP project
- NEW: Explainer on how EU-CiP will work
- Meet EU-CiP’s Harald Wagener and Roland Eils to hear about the cancer information portal project
- EU Cancer Mission newsletter highlights EU-CiP
- The #CancerInfoPortal project launches in Berlin
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