Creating the IOP
One of ECPC’s missions is to empower European cancer patients through the dissemination of fundamental information regarding cancer. In accomplishing this specific objective, ECPC focuses on specific knowledge gaps in which the pan-European, comprehensive and multidisciplinary approach of ECPC can add the most value to our Members.
The science of immuno-oncology has evolved at a rapid pace over the past few years – and the introduction of new treatments that are able to exploit the power of the immune system to fight cancer really marks a turning point for the treatment of many forms of cancer. However, it is important that both patients and policymakers understand how cancer immunotherapies and immuno-oncology therapies work and what role they may play in the treatment of different cancers.
With this goal in mind, since 2013, ECPC has worked to explore the potential of the new immuno-oncology treatments and the possibilities opened to cancer patients by these innovative therapies.
In 2014, ECPC led, with MEP Philippe de Backer, the European Expert Group on Immuno-Oncology to develop a policy position paper on immuno-oncology: the Immuno-Oncology Policy Action Framework. This document, now widely disseminated in many countries, outlined the steps European policymakers should take to ensure rapid and appropriate access to immuno-oncology treatments to cancer patients across Europe. In parallel, ECPC created the first patient guide on immuno-oncology in Europe, which has since been translated into 20 languages.
Download Guide to Patients on Immuno-Oncology
The next step for ECPC was to provide cancer patients across Europe with reliable information on cancer immunotherapy and immuno-oncology treatments, to help patients make informed choices about their treatment options.
We assessed existing resources available online and found that either they were either too technical, not patient-centric enough or not appropriate for European patients.
The Immuno-Oncology Portal was set up to fill this gap, by becoming the first European, patient-led and patient-centric information portal on cancer immunotherapies and immuno-oncology treatments.
Our guiding principles in creating the IOP: patient-centredness and scientific accuracy
There are two driving principles behind the production of the Immuno-Oncology Portal:
- Patient-centeredness: the Portal aims to empower patients and caregivers, therefore its content must be simple, understandable, yet informative;
- Scientific accuracy: all the information on the Portal must be scientifically correct, objective and free from bias. ECPC is one of Europe’s few patients’ organisations actively involved in scientific research. We strongly believe in the concept of patients as “co-researchers”. This is why we understand and value the contribution of scientific experts to produce our information material, including the Immuno-Oncology Portal.
The creation of the IOP involved close collaboration between several different experts and organisations, with the ECPC playing an essential project leadership role through all phases of its development:
- An expert group consisting of leading oncologists, scientists and patients validated the content of the IOP for scientific accuracy. Their role was essential to ensure full independence of the Portal and to make sure all content was scientific accurate, up-to-date and objective. (see members of the Expert group in Table below)
- Two expert patients, both cancer survivors and Board members of ECPC (Prof Francesco De Lorenzo, President, and Kathi Apostolidis, Vice President) provided their perspectives as cancer patients to ensure the content of the Portal was appropriate and relevant to patients.
- The Health Policy Partnership, an independent health policy consultancy, supported ECPC in the drafting of the content for the modules and website
- FlyWheel, a specialist training company, the content of the Portal in learning modules using Articulate Storyline.
List of the Expert Group members
|Prof Ana Carneiro||
Dept. Of Oncology, Skane University Hospital & Lund University
|Dr Rosa Giuliani||
Dept. Of Oncology, Hospital S. Camillo-Forlanini
|Dr Michael Hudecek||
Max Eder Research Group ‚T-cell engineering‘
|Prof Burçak Karada||
Dept. Of Internal Medicine, Ege University
|Prof Giuseppe Masucci||
Dept of Oncology-Pathology, and Karolinska Institute
|Prof Inge Marie Svane||
Dept. Of Clinical Medicine, Herlev Hospital
Dept. of Molecular Medicine, Health Science Institute,Dokuz Eylul University
|Prof Heinz Zwierzina||
Head of the Early Clinical Trial Unit, Innsbruck Medical University
To learn more
- ECPC organises a workshop on Immuno-Oncology – 5th of December 2013, European Parliament
- Policy symposium on adapting policies to a new modality in cancer treatment - December 2013
- Join us in celebrating Cancer Immunotherapy month™!
- Launch of the Immuno-Oncology Policy Action Framework
- Immuno-Oncology: report on November event
- Annual General Meeting 2015, Brussels - Session 2: Immuno-Oncology: promises, advantages and risks of the 4th pillar of cancer therapy