“This discussion is crucial! Recognising that patients are indispensable to research does not necessarily mean that they participate in the governance of the research and the agenda. This would be an important shift from research on or about patient to research with patients.”
September’s BBMRI-ERIC ELSI Dialogues session brought together experts from selected middle-income countries to explore how strong patient participation can enhance the effectiveness of oncology research and decision-making.
Cancer is an increasingly urgent public health challenge in many middle-income countries where health systems face constrained resources. In this context, strengthening cancer research and regulatory frameworks requires not only technical capacity, but also inclusive, participatory approaches that meaningfully engage patients and communities.
Our invited experts shared their knowledge about the challenges in their respective countries (Greece and Brazil) but also the general barriers and opportunities on the path towards more active patient participation in cancer research.
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Maria Theodoridou, experienced patient representative from Greece (ELLOK and Living well with Cancer) highlighted how patient organisations mature and grow with their important role in society:
“The patient movement is quite old, it’s not a new thing, and I see the patient organisations maturing. This is a constant upwards situation and this makes it very important, because we do get appreciated. Now our voice is more appreciated and heard.”
Ana Myszczuk, Professor in the Program in Planning and Public Governance (Brazil), advocated for more systematic, active involvment of patients in decision-making:
“This discussion is crucial! Recognising that patients are indispensable to research does not necessarily mean that they participate in the governance of the research and agenda. This would be an important shift from research on or about patient to research with patients.”
Patient organisations can face different challenges based on geographical barriers or cultural backgrounds, but they are united in their shared goal: Strong and inclusive patient engagement in research for the benefit of society.
Watch the webinar recording on Youtube.
Speakers:
Maria Theodoridou is a secretary of the Board of directors of ELLOK, the Hellenic Cancer Federation, representing 52 organisations of cancer patients in Greece. She is also president of the Cancer Patient Support Association: Living Well with Cancer in Heraklion, Crete.
Professor Ana Paula Myszczuk is professor in the Program in Planning and Public Governance and head of the Intellectual Property Division of the Federal University of Technology in Parana, Brazil, and at the Open University of Brazil.
Moderators:
Dr. Ilaria Colussi (BBMRI-ERIC), Dr. Zisis Kozlakidis (IARC/WHO)
This webinar is offered by the ELSI Services & Research Department at BBMRI-ERIC.
More BBMRI-ERIC ELSI recordings and educational resources
Stay informed with our ELSI Dialogues and webinars. Upcoming events are advertised on our events page. For more BBMRI-ERIC educational resources, visit our BBMRI-ERIC academy page.
This webinar is supported by the canSERV project, which aims to deliver cutting-edge cancer research services to scientists across EU member states, associated countries, and beyond. canSERV is funded by the EU.