BBMRI-ERIC Podcast

“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 learningThe 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 representativeMargareta 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 systemBuilding 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 projectsThe 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 eventsStay 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.

Visit day four of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. During these episodes, you’ll experience the congress as it happens in Bologna, Italy from 13-16 May 2025. You’ll get a flavour of the event from interviews with organisers, speakers and delegates. If you missed day three, find it at Europe-biobank-week-dot-eu.EBW is a yearly congress jointly organised between BBMRI-ERIC and ESBB. It unites over 800 biobankers, researchers, industry specialists and decision makers for keynotes, workshops, industry talks and parallel sessions over four days.This final episode, recorded on 16 May, is when congress winds down but the pace is no slower with a vibrant Ethics Café, a set of parallel sessions and the closing ceremony. Contributors to the episode, as they appear, are:Dr. Jörg Hamann, Amsterdam University Medical CenterDr. Gesine Richter, University KielProf. Prof. Roland Jahns, Universitätsklinikum WürzburgProf. Ali Kilic, Izmir Biomedicine And Genome CenterMariona Arañó Loyo, Fundació Sant Joan de DéuDr. Maria Grazia Cerrito, University of Milano BicoccaDr. Mindaugas Morkunas, Vilnius University Hospital Santaros KlinikosElsa Roland, Oslo University HospitalPatrick Skowronek, German Cancer Research Center (dkfz)Links:Sant Joan de Déu: https://www.sjdhospitalbarcelona.org/enClosing ceremony award recipients: https://www.europebiobankweek.eu/ebw-news/ebw25-live/ebw25-live-closing-ceremony/Europe Biobank Week: https://www.europebiobankweek.euBBMRI-ERIC: https://www.bbmri-eric.euESBB: https://esbb.org

Visit day three of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. Europe Biobank Week Congress is happening in Bologna, Italy from 13-16 May 2025. You’ll hear a flavour of the event through interviews with organisers, speakers and delegates. If you missed day one, find it at the Europe Biobank Week website.EBW is the most important event of the year for the global biobanking community. A yearly congress, jointly organised between BBMRI-ERIC and ESBB, it unites over 800 biobankers, researchers, industry specialists and decision makers from across the life sciences to discuss the latest innovative research and industry changes. It features keynotes, parallel sessions and workshops and is held over four days.This episode, recorded on 15 May, is when congress is in full swing.Contributors to the episode, as they appear, are:Istahil Mohammed Ibrahim, Statens Serum InstitutAdrie Kromhout, Amsterdam University Medical CenterProf. Professor Mait Metspalu, Institute of Genomics, University of TartuDonal Melanaphy, Thermo Fisher ScientificTania Porqueddu, Università Di SassariDr. Gianni D’Errico, Toscana Life Sciences Dr. Piotr Mrówka, Institute of Hematology and Transfusion MedicineDr. Mignon van Gent, Amsterdam University Medical CentreLinks:Estonian Biobank: https://genomics.ut.ee/en/content/estonian-biobankEP PerMed: https://www.eppermed.eu/Europe Biobank Week: https://www.europebiobankweek.euBBMRI-ERIC: https://www.bbmri-eric.euESBB: https://esbb.org

Visit day two of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. Europe Biobank Week Congress is happening in Bologna, Italy from 13-16 May 2025. You’ll hear a flavour of the event through interviews with organisers, speakers and delegates. If you missed day one, find it at the Europe Biobank Week website.EBW is the most important event of the year for the global biobanking community. A yearly congress, jointly organised between BBMRI-ERIC and ESBB, it unites over 800 biobankers, researchers, industry specialists and decision makers from across the life sciences to discuss the latest innovative research and industry changes. It features keynotes, parallel sessions and workshops and is held over four days.This episode, recorded on 14 May, is when congress kicked off the scientific programme and covers the highlights.Contributors to the episode, as they appear, are:Prof. Antonio Zoccoli, President of the ICSCProf. Walter Ricciardi, Università Cattolica del Sacro Cuore, RomeDr. Nicola Miller, School of Medicine, University of GalwayZohaib Hassan, German Biobank NodeProf. Elke Smits, Antwerp University Hospital and ESBB AmbassadorDr. Ricard Martinez, University of ValenciaDipl.-Ing. Roland Leiminger, ESBBProf. Jens K Habermann, BBMRI-ERICLinks:Europe Biobank Week: https://www.europebiobankweek.euBBMRI-ERIC: https://www.bbmri-eric.euESBB: https://esbb.orgICSC: https://www.supercomputing-icsc.it/en/

Visit day one of the Europe Biobank Week Congress in this mini-series covering the event - part of the BBMRI-ERIC Podcast. Europe Biobank Week Congress is happening in Bologna, Italy from 13-16 May 2025. You’ll hear a flavour of the event through interviews with organisers, speakers and delegates. EBW is the most important event of the year for the global biobanking community. A yearly congress, jointly organised between BBMRI-ERIC and ESBB, it unites over 700 biobankers, researchers, industry specialists and decision makers from across the life sciences to discuss the latest innovative research and industry changes. It features keynotes, parallel sessions and workshops and is held over four days.This episode takes you to the first day - 13 May - which hosts several workshops run by experts within their field. Learn what makes the workshops unique and how they’re valued as education opportunities by delegates.Contributors to the episode, as they appear, are:Prof. Antonino Rotolo, Università di BolognaDr. Nabila Choudhry - Research Analyst-Ethicist at WCM-QHugas Jasinskas, IT Specialist from The Biobank of Lithuanian Population and Rare DisordersProf. Marialuisa Lavitrano, National Node Director for BBMRI ItalyDr. Sissy Kolyva, Hellenic Pasteur Institute AthensStella Antoniou, Quality Manager at. BMRI-ERICDr. Marta Sobalska-Kwapis, Centre for Digital Biology and Biomedical Science - Biobank LodzLinks:Europe Biobank Week: https://www.europebiobankweek.euBBMRI-ERIC: https://www.bbmri-eric.euESBB: https://esbb.org

In this engaging discussion, Marco Montali, a leading expert in artificial intelligence, and Nikolaus Forgó, a notable IT and IP law professor, dive deep into the complex interplay of AI in biobanking. They explore how AI tools can revolutionize medical diagnostics and enhance biobank operations. The legal frameworks like the EU AI Act are dissected, revealing their implications and challenges. They highlight the importance of data quality, the ethical dimensions of integrating AI, and the necessity for collaboration to navigate the intricate landscape of regulations and technology.

“It’s not a secret to anybody that the biodiversity is decreasing on all continents, and this implies a lot of important issues for the day-to-day life of human beings. For a sustainable use of the biodiversity and benefit sharing, the Nagoya protocol was adopted.”(Melania Muñoz Garcia)Sharing is caring. This also holds true for biological samples and data as resources for research. Episode 27 of the BBMRI-ERIC podcast explores how the Nagoya Protocol - an international agreement regulating collection, storage and sharing of non-human genetic resources - helps biobankers and researchers to distribute and utilise these resources responsibly, especially in times of globally decreasing biodiversity.A key aspect of the agreement is the goal to share any benefits that arise from utilisation of these resources in a fair and equitable way between the country/institution that stores and provides the resources and those who use it. This promotes responsible use and fosters collaborations.“Compliance with the Nagoya Protocol is not just a legal requirement, it's a powerful tool for promoting fair and equitable sharing of genetic resources.”(Christian de Guttry).In this recording of our latest ELSI Dialogues session in February 2025, three invited expert speakers joined host Ilaria Colussi, BBMRI-ERIC’s Data Protection Specialist, to share their knowledge and practical experience with the Nagoya protocol. Melania Muñoz Garcia (Leibniz Institute, DSMZ), Josephine Uldry (Swiss Biobanking Platform) and Christian de Guttry (Swiss Institute of Bioinformatics) describe the fundamental basics of the Nagoya Protocol and explore practical examples how the Nagoya protocol is applied in different countries and institutions.Changes in daily practise have to go hand in hand with a change of the perception among researchers that compliance to regulations is a bureaucratic burden. In contrast, following the Nagoya Protocol’s guidelines supports ethical and reproducible science with genetic resources, with biobanks as crucial players.You can also watch this and previous ELSI Dialogues sessions as webinar video recordings on our Youtube channel. Further reading:The Nagoya protocol: https://www.cbd.int/abs/default.shtmlThe Nagoya protocol at the Leibniz Institute DMSZ website: https://www.dsmz.de/collection/nagoya-protocolSharing nature’s genetic resources by the EC: https://environment.ec.europa.eu/topics/nature-and-biodiversity/sharing-natures-genetic-resources_enELSI Dialogues on Youtube: https://www.youtube.com/watch?v=aZA1rVT75toELSI services: https://www.bbmri-eric.eu/elsi/

“AI systems need to be human centric, they should serve humanity and the common good” Episode 26 takes you to a webinar on developing strategies for a trustworthy AI explored at the example of South-eastern Asia. After a quick introduction on how the European Union approaches this challenge, Thilma Komaling, one of the authors of Indonesia’s strategy on Artificial, takes you her home country where AI-assisted tools already help to improve broad access to health care.Thilma shares her more than 20 years of experience in policy development here in this webinar organised by the BBMRI-ERIC ELSI team. ELSI specialises in addressing ethical, legal and societal implications of biobanking and the responsible use of sensitive data and new technologies.The transformative potential of AI will not stop at national borders and so we can all profit from exchanging our experiences to use this technology for the best of society. Together with Thilma, Ilaria Colussi, one of BBMRI-ERIC’s legal experts, explores the common ground between the EU’s and Indonesia’s approach to a trustworthy AI.“We need something very close to the heart of the people of Indonesia, because this is something that needs to be originally from Indonesia. What we believe and what we want to carry forward as a nation.”Indondesia explores a strategy that builds on the country’s core values to find a human-centered apporach to responsibly integrate this highly transformative technology into the daily live. One example is Halodoc, an AI-assisted app, that allows Indonesia’s citizens access to health-related advise and information even in the remotest areas of the large, archipelagic country with its hundreds of languages. Further reading (in order of contribution):EU guidelines on trustworthy AI: https://www.aepd.es/sites/default/files/2019-12/ai-ethics-guidelines.pdfIndonesia’s strategy for Artificial Intelligence: https://www.mfat.govt.nz/assets/Trade-General/Trade-Market-reports/Indonesias-National-Strategy-for-Artificial-Intelligence-July-2023.pdfELSI Dialogues on Youtube: https://www.youtube.com/watch?v=TSrgDBZUUDQ&list=PLIu6KJ19npXy_HLjqtxNuXrB1XkADjWzPELSI services: https://www.bbmri-eric.eu/elsi/

“Without the patient citizen’s data, there is no future for research.”Episode 25 takes you to a workshop on information points for citizens under the European Health Data space. The workshop is jointly organised under the EHDS2Pilot project by BBMRI-ERIC’s ethical, legal and societal implications team and the Spanish Research Council in Brussels – CSIC where the workshop is being held.The project brings together 17 partners including health data access bodies, health data sharing infrastructures and European agencies with the aim to build a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data – known as “HealthData@EU” - which will serve research, innovation, policy making and regulatory purposes. The outcome is for the consortium to collaborate closely with the European Commission and their team working on developing the central services for secondary use of health data. Why does communicating about EHDS matter? Under EHDS, citizens will have an opt out right in Europe so they need to be made aware their data may be used outside the immediate healthcare context. EHDS has provisions for individual control of data. How much should you make citizens aware of the use of their data and opt out rights?This is a major topic that is being debated in political spaces and across European health communities. That’s because, if you care about how your health data might be used for research, EHDS is relevant to you.The podcast explores how best to communicate with citizens that their rights are taken seriously, that they can keep in control of their data and its use, and to fulfil the legal obligations under the EHDS regulation.Join patient organisations, experts and policy makers as they discuss the varied concepts that exist in the EU. You’ll hear about successful initiatives for informing the public about ongoing data sharing activities, as well as understanding past communication failures to give you a better understanding of what will help foster the implementation of the upcoming EHDS Regulation.Further reading (in order of contribution):BBMRI-ERIC ELSI: bbmri-eric.eu/elsi/EHDS2Pilot Project: ehds2pilot.euSpanish Research Council: csic.es/en/csicEuropean Patient’s Forum: eu-patient.euELGA: elga.gv.atKristiania University: kristiania.no/en/about-kristiania/employees/school-of-communication-leadership-and-marketing/departement-of-communication/audra-diers-lawson/CPME: cpme.euEFPIA: efpia.euDigital Europe: digitaleurope.orgFrench Health Data Hub: www.health-data-hub.fr/FINData: findata.fi/en/MyGenome Portal: portaal.geenidoonor.ee/sisselogimineGerman Portal for Medical Research Data: medizininformatik-initiative.de/en/medical-research-request-health-data-centrallyHealth Data Lab: healthdatalab.deHIQA: hiqa.ie/about-usEHDS - European Commission: health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en

Episode 24 introduces you to the canSERV project that focuses on providing over 400 cutting-edge and customised cancer research services. BBMRI-ERIC acts as coordinator for canSERV.The services and tools are made available to the cancer research community EU wide, enable innovative R&D projects and foster precision medicine for patients’ benefit across Europe.Experts from the project walk listeners through its 4th Challenge-Driven Call on “Training the Next Generation of Cancer Researchers”.Early Career Cancer Researchers, for example first-stage researchers (PhD students, junior researchers without PhD), or recognised researchers (postdocs, assistant professors, young investigators) world-wide are invited to apply for free access to cutting-edge transnational services with an indicative overall budget for this call of EUR 500,000.The primary objective of this call is to empower early career scientists through access to research services and training in order to advance their scientific merits and careers.Originally a live webinar, the podcast is presented by canSERV consortium members Saba Abdulghani, Jens Habermann, Vitor Martin Dos Santos, Enzo Medico, Manuela Pausan and Pauline Audergon. The Q&A that followed after is being developed into a FAQ. Explore the project, and apply to the Open Call, by visiting the canSERV website.