In collaboration with the Organisation of European Cancer Institutes (OECI), the EACR recently launched its first ‘Patient Involvement in Cancer Research’ virtual event. It was designed to explore how meaningful involvement of cancer advocates throughout the scientific research process can lead to impactful cancer research. The one-day meeting on 28 October 2025 highlighted some of the current working groups and patient advocate initiatives taking place across Europe, and offered practical examples and insights into how researchers, clinicians, and patients can work together.
The objective of the virtual event was to provide an introductory step to the research community, cancer researchers, clinicians, and advocates by addressing the current state of public and patient involvement in cancer research and understanding the challenges ahead. The programme focussed on how to build bridges between science and cancer research through education and public engagement. There was also a focus on addressing the challenges of creating successful patient/researcher involvement and partnerships in cancer research, and how researchers, clinicians, and patient advocates can accelerate advances in cancer research together.
The event was praised for being a timely topic with a great selection of experts discussing a range of relevant experiences in patient advocacy. 96% of participants said that they would recommend it to others. “The inclusion of experiences shared by patients and advocates brought depth, authenticity, and emotional resonance to the session. It was engaging and inspiring”, wrote one respondent to our participant feedback survey, with another commenting “The most valuable outcome was gaining practical insights on how to meaningfully integrate patient perspectives into research design and decision-making, which will directly improve the translational impact of my work.”
Bringing in expertise from across the world
The event brought together perspectives of several patient-focused organisations across Europe and the wider world as we heard from representatives from OECI, Cancer Patients Europe, Digestive Cancer Europe, Europa Donna, FC AECC and KRAS Kickers.
The conference was opened by Delia Nicoara, a co-organiser of the meeting, discussed her role as Chairperson for ‘The OECI for Patients Working Group’, highlighting what the group is aiming to achieve in her talk ‘From Bench to Bedside Together: The Role of OECI4patients – Hospitals, NGOs and Patients in Cancer Research’. We learned how the OECI working group has been set up to ensure that patient voices resonate throughout all stages of cancer care and research. Dr Nicoara outlined how the group aims to empower cancer patients and their families by providing access to accurate information, resources, and training opportunities with the ultimate goal of ensuring patient perspectives influence research design, implementation, and outcomes.
In the next talk, ‘Patient Co-creation in GI Cancer Research’ we heard from patient advocate Marianna Vitaloni from Digestive Cancers Europe – a European non-profit umbrella organisation uniting patient organisation and collaborating with stakeholders dedicated to digestive cancers. Marianna emphasised the importance of involving patients in research projects from the early stages of project planning and design. She also discussed how researchers should use clear language and visual communication to engage and inform patients whilst also recognising patient expertise. One of the key takeaways from Marianna’s talk was that co-creation should never end; the patient should be included at all stages of the research lifecycle, with feedback constant and continuous. If you’d like to hear more on this subject, Marianna’s talk is available to watch here.
Patient Partnership Through the Researcher’s Lens
George Sflomos from EPFL added the perspective of a researcher in his talk: ‘Collaborating with Patients in Cancer Research to Address Challenges and Drive Progress’. The talk highlighted the need for researchers and patients to co-create knowledge by developing a culture of shared purpose. Another key message was Dr. Sflomos’s desire that diversity and inclusion should be paramount amongst patient involvement groups so that patient voices are represented across all communities. If you are an EACR member, you can watch the full talk in the EACR member area.
Turning Experience into Influence: The Advocate’s Lens
Tanja Spanic (Europa Donna) and Terri Conneran (KRAS Kickers) brought to the table the patient perspective. In her talk ‘Patient Involvement in Cancer Research – patient advocate perspective’, Tanja shared her own personal perspectives from her background in training as a veterinarian, to studying a PhD in Molecular and Behavioural Neuroscience and being diagnosed with breast cancer at the age of 26. The key points raised during her talk where how to embed patient perspectives in research agendas, how to pick the right patient advocate, and building important structures for sustainable patient involvement. If you are an EACR member and you would like to hear the talk from Tanja, then please log-in to your EACR account and navigate yourself to our EACR member area.
Terri delivered a powerful personal experience of being a patient advocate in her talk: ‘Biomarkers & Belonging: Making Space for the Person in Precision Medicine’. Diagnosed with lung cancer in 2017, and unable to find any existing groups to offer advice, guidance and support, Terri started KRAS Kickers to join patients, care partners, doctors, and researchers together. It was a passionate discussion and a clear example of how connecting with others can provide strength and encouragement to all involved. Her talk was widely praised in the participant feedback survey with one attendee writing that it was ‘most interesting since they shared new different, viewpoints and information I hadn’t seen or heard about before’.
An opportunity for researchers and patient advocates to learn together
The event concluded with a panel discussion, giving an opportunity for participants to interact with our speakers. We heard insights from many attendees who are part of their own patient-focused organisations. The discussion focussed on some of the common themes and challenges of including patient advocates in cancer research, but also the hard work and effective steps being made to increase successful patient/researcher partnerships across the globe.
This first EACR-OECI ‘Patient Involvement in Cancer Research’ virtual event provided an opportunity for researchers and patient advocates to learn together and build insights into how to engage with patients and patient organisations. The EACR aims to build on this first meeting by providing future events, opportunities and resources that strive to foster collaboration amongst cancer researchers and patient advocacy organisations. For further information please go to our Patient Organisations page on the EACR website.
EACR Conferences
At the EACR we are dedicated to providing excellent cancer research conferences where the latest research topics and interaction for participants are the very highest priorities. Make sure you add the dates of the upcoming EACR Conferences to your diary now. Don’t forget we offer member discounts on all of our registration fees!
