“No one has to reinvent the wheel in their work, but we need more visibility for the often invisible work, working with patients and the benefits this has for research.”

(Melanie Goisauf)

In episode 33 of the BBMRI-ERIC podcast we listen in on a recent BBMRI-ERIC ELSI Dialogues session recorded in June 2025, a vivid experts’ discussion covered concepts and practical means to effectively utilise the potential of patients’ unique perspectives. Moderator Melanie Goisauf, ELSI Senior Scientist at BBMRI-ERIC, discussed ways to successful patient engagement with three invited experts: Margareta Haag (Chair of the Swedish Network against Cancer), Stefanie Houwaart (Patient representative in the German BRCA network) and Zisis Kozlakidis (Head of Laboratory Services and Biobanking at IARC/WHO[ES1] ).

Patient engagement is a continuous process of mutual learning

The challenge of actively involving patients in medical research has many names - patient engagement, participation, involvement or participatory research. The unifying goal behind these terms is to give patients a powerful voice and an active role in the process of developing better and more effective treatments and care for everyone.

The discussion revolved around one central question: What does successful patient engagement in research look like? The panellists’ opinions can be summarised as univocal appeal to all involved groups; to keep constantly learning and find solutions together. Researchers need to adapt their work from a patient’s perspective and vice versa - patients benefit from learning the basics of research projects. Stefanie Houwaart (Patient representative in the German BRCA network) emphasised the importance of constant mutual learning:

“It's a process. And we are all learning all the time. So, we three [invited experts] might be in the game for several years already. But we are still learning. And lots of people need to learn. And scientists have to be trained in patient engagement. In Germany there is now more and more training for scientists in patient participation, to learn how to do this and implement this in their very own project.” (Stefanie Houwaart)

Everyone can become a patient, but it needs time and effort to become a patient representative

Margareta Haag (Chair of the Swedish Network against Cancer) presented her experiences and views from the patient and patient representative perspective. Margareta sketched the journey of a patient who first enters the system without knowing how to navigate it but is able to learn along the way to become an educated patient advocate.

“From patient-to-patient advocate, it takes a long time. It's a process. […] It takes time to become a patient that actually can communicate with persons on the other side of the table and then also in research. But you can learn, and you can also teach the professionals that this is the way I work and this is my life.” (Margareta Haag)

From individual efforts to structural changes of the system

Building on individual initiatives, the value of bringing educated patient advocates to the table is getting more broadly recognised as an integral part of medical research. But systematically incorporating this into daily research practice needs effort and engagement from all sides to adapt existing systems. Zisis Kozlakidis, virologist and Head of Laboratory Services and Biobanking at IARC/WHO, introduced this aspect addressing structural shortcomings in the system:

“Part of successful patient engagement is starting to break down some of the silos that have existed for a long time. One of the issues that we have is that a lot of the systems that we see globally, as part of our work, have not been designed with patient engagement in mind at all. […] Even when there are some initiatives to address this, you still see a space that's filled with professional jargon that is not really addressing the needs of the patient. […]. In this sense, we put a lot of emphasis on the education of the patient, the education of the general public as to what is possible.” (Zisis Kozlakidis)

Practical tips patient involvement in research projects

The discussion concluded with practical considerations for researchers to help improve future research by involving patients’ advocacy groups. Stefanie Houwaart stressed how important it is to start developing relationships with patient organisations early on:

“Often, the reality is that funding organisations, a ministry or the European Commission says, okay, now we have the checkpoint “patients’ participation” and then you have to run and you have to do this in a short time. I would really recommend every scientist who wants to do patient participation, to start reaching out to patient organisations early, even before they have a concrete project in mind.” (Stefanie Houwaart)

Melanie Goisauf, Moderator and Senior Scientist at BBMRI-ERIC pointed out the lacking visibility of the progress that is already being made in this field and that researchers and patients can build on:

“No one has to reinvent the wheel in their work, but we need more visibility for the often, I would say, invisible work, working with patients and the benefits this has for research.” (Melanie Goisauf)

More BBMRI-ERIC ELSI recordings and events

Stay informed with our ELSI Dialogues and webinars. Upcoming events are advertised on our events page. Including the upcoming 2025 ELSI Symposium in October addressing Ethical, Legal, and Societal Aspects in View of Recent EU Legislation.

This podcast is part of the canSERV project, which aims to deliver cutting-edge cancer research services to scientists across EU member states, associated countries, and beyond. The project unites a multidisciplinary consortium of 18 European partners specialising in oncology, project management, and sustainability.

The panellists:

Margareta Haag is the Chair of the Swedish Network against Cancer – an umbrella organization for cancer-profiled patient organizations and their families. As a Lymphoma patient since 1994 and Lymphoedema patient since 1995, Margareta acts as a patient representative. Margareta is the Former Executive Director for an international professional body and The Federation of Biomedical Laboratory Science as well as holding various positions including President of the umbrella organization Network against cancer and former President of the Swedish Association of Chronic Oedema.

Dr. rer. nat. Stefanie Houwaart MPH has a Diploma in Biology, a Master of Science in Public Health, and Dr. rer. nat. in Pharmaceutical Chemistry. Since 2012, Dr. Houwaart is active member of the patient community and patient representative in science and politics at the BRCA network e.V.. She is also Co-Founder and Managing Director of partieval – Advancing Participatory Skills, Process Support and Evaluation in Health.

Dr. Kozlakidis is a virologist, with a PhD in microbiology from Imperial College London. Dr. Kozlakidis is the Head of Laboratory Services and Biobanking at the International Agency for Research on Cancer, World Health Organization (IARC/WHO). Dr. Kozlakidis is responsible for one of the largest and most varied international collections of clinical samples in the world, focusing on gene–environment interactions and disease-based collections.

Dr. Melanie Goisauf is an accomplished social scientist with a PhD in Sociology from the University of Vienna. She also studied at the Royal Holloway University of London and completed the postgraduate program "Sociology of Social Practices" at the Institute for Advanced Studies (IHS) Vienna. Dr. Goisauf currently works as senior scientist at BBMRI-ERIC, where she is involved in several research projects and serves on ethical advisory boards. Dr. Goisauf also leads the Ethics of AI Lab, which focuses on the ethical and social implications of artificial intelligence.