EARA Webinar puts the spotlight on patient voices in animal research communication
- Inês Serrenho
- Sep 25
- 6 min read
Updated: Sep 26
The European Animal Research Association (EARA) hosted a webinar last week highlighting its Patient Discovery Project, an initiative that brings patients with lived experience of medical conditions into direct dialogue with biomedical researchers who conduct animal research.
The Patient Discovery Project: a new approach to science communication
EARA Executive Director Kirk Leech opened the session by contextualising the project within EARA's mission and evolution since 2014. "Now that the research community has decided to be more open and transparent about animal research, I think the patient voice needs to be part of a general chorus to the public," Leech explained.
The Patient Discovery Project represents a multi-phase approach designed to create lasting change in how patients and people living with disease perceive animal research, moving beyond traditional communication strategies to include the voices of those who directly benefit from biomedical research and are often neglected in the discussion.
Patient Discovery Days: from Portugal to the Netherlands
EARA's Patient Engagement Officer, Inês Serrenho, and Policy and Projects Officer, Monique Sundin Havermans, presented insights from Discovery Days held in Portugal and the Netherlands, focusing on diabetes and Parkinson's disease respectively.
The Portuguese Diabetes Discovery Days, conducted with the Portuguese Association for the Protection of Diabetics (APDP) and NOVA Medical School, gave participants hands-on experience with animal facilities. Attendees observed how diabetes is induced in mice through dietary manipulation, witnessed welfare measures in practice, behavioural tests that access mice memory and motor skills and observed a live surgical intervention in a rat under anaesthesia.
In the Netherlands, the Parkinson's Discovery Days spanned two consecutive days, featuring comprehensive lectures on Parkinson's research followed by laboratory visits at Radboud University, which included a cell culture lab, hospital lab with human samples being analysed and the animal facilities that included MRI and CT scanners for rodents. As non-human primates are also an important animal used to study Parkinson’s disease, a second visit was held at the Biomedical Primate Research Centre (BPRC). This visit covered research from cellular work to primate studies, including animal training demonstrations and clicker training exercises for participants.
Panel discussions reveal transformative experiences
Two panel discussions provided deeper insights into these discovery days. The Netherlands panel was moderated by Monique Sundin Havermans and featured Marijn Kuijpers from Radboud University, Jinte Middeldorp from BPRC and patient representative Monique Bosman.
First, researcher Marijn Kuijpers from Radboud University, which transforms human skin cells from people living with Parkinson into brain cells to study the disease, started by contextualising why although her research does not involve animals, it was still important to be part of the Netherlands Discovery Days. "What they [the patient-derived cells] do allow us is to look very, very closely at very fundamental cellular and molecular mechanisms," Kuijpers explained, emphasising that this basic research forms "the foundation of any future therapy." Following patient visits, Kuijpers noted increased energy and motivation in her lab following patient visits. "We got really deep and interesting questions," she observed, highlighting the scientific engagement of participants.
Jinte Middeldorp from BPRC studies several age-related diseases in non-human primates. Jinte emphasised the importance of communicating about primate research, including being transparent about animal care standards and the principle of maximising research output from each animal. Jinte also commented on the visible transformation in participants throughout the day: "You could see the change in the participants like coming in with reservations and maybe sceptical, or maybe even negative feelings towards our research, and then leaving with understanding on why this is necessary." The impact extended beyond the initial visit, with one Parkinson's patient later returning to present the patient perspective to a broader group of BPRC researchers, creating an ongoing dialogue that enriched both sides' understanding.
Patient representative Monique Bosman, who participated in both Dutch events, shared her perspective as someone living with Parkinson's for nearly eight years and described the experience as valuable and hopeful. “As a person with a serious, progressive and incurable disease, it gives me hope that so many people are working on solutions." While maintaining her concerns about animal use, she expressed surprise at the high welfare standards: "I was very surprised to see the really good living conditions, that the monkeys live in groups and they actually have a better space and surroundings than in many zoos." Monique also commented on seeing how alternatives are used wherever possible, and how animal tissue is reused to answer multiple research questions.
The Portuguese panel, moderated by EARA’s Deputy Director, Nuno Miguel Gonçalves, featured Sílvia Conde from NOVA Medical School, who led the live surgical demonstrations during the lab visit, Rogério Ribeiro from the APDP Diabetes Association and two patient representatives, António Coelho and José Júlio Santos, who had taken part in the visit.
Opening the discussion, Sílvia Conde, a researcher who studies the interface between the nervous system, the carotid body and diabetes from NOVA Medical School, explained her motivation for welcoming people living with diabetes into the lab: “Type 2 diabetes is a multi-organ disease that can be difficult or even impossible to study without using animals. We wanted to highlight the importance of animal research in the understanding of the mechanisms of disease, in the finding of new therapeutic targets and even in the testing of new medicines.” She also highlighted NOVA Medical School’s commitment to openness, noting its signature of the Portuguese Transparency Agreement on Animal Research. Bringing people with diabetes into the facility, she added, was not only about showing them the science but also about listening: “It was an amazing opportunity to listen and learn from their experiences and to see if our research is aligned with real [patient] needs.”
From the patient organisation side, Rogério Ribeiro emphasised that initiatives like this are central to APDP’s mission. Beyond advocacy and healthcare services, the association invests heavily in health literacy — helping people with diabetes make informed decisions about their treatment. “People won’t adhere to treatments if they don’t understand what is being proposed to them,” he said.
Both patient participants, António Coelho and José Júlio Santos, echoed the importance of that openness. António Coelho, who works in the medical devices and pharmaceutical sectors, admitted that although he was aware of animal experiments, he had underestimated the level of care involved. “The animals are treated like they were pets at home,” he said. “The animals are well kept in terms of hygiene, in terms of comfort, in terms of temperature, in terms of avoiding stress.” António also noted that even blood samples are taken with minimal discomfort and traced a parallel to what he already observed in human surgeries, such the use of a warm blanket to keep body temperature during anaesthesia and monitorisation of the vital signs. He also noted that this level of regulation and care gives him confidence that treatments entering human trials are safe: “With all the regulatory compliance we have in Europe, we can be sure that animal experiments are conducted responsibly and only when necessary. That’s vital for building confidence among patients like us, who are the end users of this work.”
Academic perspective on patient involvement
David Azilagbetor from the University of Basel presented research on patient involvement in animal research oversight. His studies showed that, when asked to evaluate actual research protocols, patients showed a nuanced perspective, with acceptance rates ranging from 63–70% depending on the study. This indicates that patient views are not simply “for” or “against” animal research, but instead weigh the purpose, potential benefits and ethical considerations of each project. David argued that this kind of input is crucial for bridging societal divides around animal research. Involving patients not only reflects democratic principles—ensuring that those directly affected by disease have a voice—but also helps build legitimacy and trust in research oversight. His findings suggest that patients can contribute to more balanced decision-making, offering both support and critical reflection that can guide responsible practices in animal research.
Looking forward
The webinar demonstrated the Patient Discovery Project's potential to bridge the gap between biomedical research and its ultimate beneficiaries. The project represents an opportunity to hear the patient's voice and to show the importance of biomedical and animal research to the advancement of medical treatments and breakthroughs. The recording is available on EARA's YouTube channel.
EARA's next webinar in the series, focusing on the role of veterinarians in animal research, is already open for pre-registration.
About the project
The project continues to seek partnerships with additional patient organisations across different medical conditions and is actively seeking funding and support to expand its reach and impact further. The Patient Discovery Project webage provides additional information about the initiative and opportunities for involvement. Please contact iserrenho@eara.eu for any enquiries.
