On 24–25 June 2026, Cancer Patients Europe (CPE) welcomed researchers, patient advocates, clinicians, policymakers, regulatory experts, and project representatives to Brussels for the VOICE PM Networking Event: Meaningful Patient Involvement in Translational Personalised Medicine Research. Organised within the VOICE PM networking project under the framework of the European Partnership for Personalised Medicine (EP PerMed), the event provided an important platform for exchanging knowledge, sharing experiences, and advancing dialogue on meaningful patient involvement across the personalised medicine research pathway.
Bringing together participants from projects OASIS, SALVOVAR, BATMAN, IPerGlio, ImmuneT-ME, Surpass-TNBC, HEAL, PerCareGlio, OPTIMIZE, and OncoProTools, alongside patient organisations, healthcare institutions, academia, and industry, the event highlighted the value of collaboration in strengthening patient-centred research, patient involvement and innovation.
Throughout the two-day programme, participants explored practical approaches to involving patients throughout translational personalised medicine research. A key focus of the event was how to move beyond consultation towards meaningful partnerships with patients throughout the research process. Participants identified several barriers to effective patient involvement, including limited access to diverse patient populations, difficulties in communicating complex scientific concepts in accessible language, late involvement of patients in research, insufficient feedback to participants, and limited awareness of research opportunities and reimbursement mechanisms. At the same time, speakers highlighted successful approaches such as involving patients in the co-design of research protocols and informed consent materials, incorporating patient-reported outcomes, developing patient information resources, embedding patient engagement training for researchers, and creating opportunities for direct dialogue between patients and scientists. These examples demonstrated that meaningful patient involvement strengthens the quality, relevance, and impact of personalised medicine research.
Patient representatives reinforced many of these findings by sharing their own experiences of participating in research. While acknowledging significant progress over the past decade, they emphasised the need for greater transparency, better communication throughout the research lifecycle, and clearer pathways for patients to become involved in research projects. Participants also stressed the importance of recognising patients as equal partners in research and ensuring that sufficient resources are available to support both individual patients and patient organisations contributing to scientific projects.
The event concluded with a shared commitment to continue building the evidence base for meaningful patient involvement, promoting best practices, and developing recommendations that will support more inclusive, patient-centred translational research across Europe.
CPE extends its sincere thanks to all speakers, moderators, participants, and project partners whose expertise and active engagement contributed to the success of the event.
Learn more about the project here.
Reports of the event will be available soon here.
This network and event are supported under the frame of the European Partnership for Personalised Medicine, EP PerMed, (GA N° 101137129).
The views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the European Partnership for Personalised Medicine (EP PerMed), national/regional funding organisations, the European Union or the European Commission. Neither of these parties can be held responsible for them.