Programme of the Conference (PDF)
Five plenary sessions focused on the five perspectives of the Vision Paper: citizen engagement, involvement of health professionals, implementation within healthcare systems, health-related information, and the development of sustainable economic models covering the entire spectrum of personalised medicine.
Each session included two talks and a panel discussion to widen the session’s perspective with other expertise.
1st DAY
Welcome & Opening Statements
Thierry Damerval, CEO of ANR
Irene Norstedt, Director responsible for the People Directorate within the DG for Research and Innovation
Ejner Moltzen, Innovation Fund Denmark, Chair of ICPerMed
Eduardo Cazap, Latin American & Caribbean Society of Medical Oncology SLACOM, Scientific Committee
SESSION: Informed and engaged citizens - personalised medicine for the individual and society
Chairs: Dr. Mette Hartlev & David Haerry
Through this session, it was discussed how and when to include patient perspectives in the development life cycle of personalised medicals, prevention, products and interventions. The session showed the opportunities, benefits and barriers of patient empowerment in healthcare, research activities or policy development. The session showed the importance of the patient’s role to provide an overarching perspective and first-hand experience on what it is like to live with a disease, and by doing that, ensuring that interventions truly respond to patient needs and priorities. Conversely, due to the complexity of personalised medicine, it is challenging to engage patients and citizens. A focus was made on the data integration and management as well as on education and training that are required to allow patients and patient organisations to contribute to research and to disseminate health-related information through their communities.
Introduction by Dr. Mette Hartlev & David Haerry
Bettina Ryll
Personalised Medicine - A patient perspective
Horizon Europe Cancer Mission Board and Melanoma Patient Network Europe, Sweden
Barbara Prainsack
The role of patent participation in Personalised Medicine
Department of Political Science, University of Vienna, Austria
Panel Discussion:
Bettina Ryll, Horizon Europe Cancer Mission Board and Melanoma Patient Network Europe, Sweden
Barbara Prainsack, Department of Political Science, University of Vienna, Austria
Peter Goodhand, GA4GH, Canada
Larry Norton, Memorial Sloan Kettering Cancer Center, USA
SESSION: Enhancing life science- and health-related data through biomedical research, data harmonisation and regulatory frameworks
Chair: Dr. Alfonso Valencia
Data and data analytics are basic pillars of personalised medicine. Handling and interoperating large heterogeneous data sets represent a conceptual and technical challenge, including issues of data protection and security, infrastructure and computational resources, as well as the need of making data and data interpretation accessible to a diversity of end-users from patients and scientist to medical doctors. Data infrastructure and technical solutions were presented on how to allow access to biomedical and medical data and how to achieve the integration of data sources of disparate nature.
Introduction by Dr. Alfonso Valencia
Peter Goodhand
The Changing World of Human Genomic Data Sharing
CEO Global Alliance for Genomics and Health (GA4GH), Canada
Søren Brunak
Longitudinal Phenotypes and Disease Trajectories at Population Scale
Novo Nordisk Foundation Center for Protein Research at the University of Copenhagen, Denmark
Panel Discussion:
Peter Goodhand, GA4GH, Canada
Søren Brunak, Novo Nordisk Foundation Center for Protein Research at the University of Copenhagen, Denmark
Barbara Prainsack, University of Vienna, Austria
Ernst Hafen, ETH Zurich, Switzerland
SESSION: Enabling healthcare systems to implement the next generation of medicine: a crucial shift
Chair: Prof. Eduardo Cazap
The implementation of personalised medicine is a paradigm shift for our current healthcare systems and will require a switch from a system focusing on treating diseases to a system ensuring that appropriate preventive measures are set in place, that early diagnosis is made or optimal therapies are selected. This session provided an insight from a public health expert view on the design, implementation and evaluation of healthcare system reforms and on how to facilitate and guarantee an equitable access to personalised healthcare for all citizens. The session furthermore demonstrated how genomics and technologies are changing the practice of medicine and public health improving health population and disease prevention.
Introduction by Prof. Eduardo Cazap
Rifat Atun
Health Systems, Innovation and Precision Medicine
Harvard University, USA
Andres Metspalu
From biobanking to personal medicine and disease prevention
Estonian Genome Project
Panel Discussion:
Rifat Atun, Harvard University, USA
Andres Metspalu, Estonian Genome Project
Rizwana Mia, SAMRC, South Africa
2nd DAY
SESSION: ICPerMed Recognition
Chair: Dr. Gaetano Guglielmi, ICPerMed Secretariat, Italian Ministry of Health, Italy
ICPerMed featured and honoured in this session best practices in personalised medicine research through the ICPerMed Recognition 2020, that aims to recognise, encourage, promote and disseminate outstanding examples. The third ICPerMed Recognition edition was open to candidates worldwide, who have published scientific papers or developed best practice strategies in the field of personalised medicine between 1st January 2018 and 31st October 2019. The winners presented their results during this session.
Introduction by Dr. Gaetano Guglielmi
Maritha Kotze,
A pathology-supported genetic testing platform for application of breast cancer pharmacogenetics at the point of care (POC) using an integrated service and research approach
Department of Pathology, Stellenbosch University and National Health Laboratory Service - NHLS- Tygerberg Hospital, South Africa
Daniela Gallo,
A combined ANXA2-NDRG1-STAT1 gene signature predicts response to chemoradiotherapy in cervical cancer
Sacro Cuore Cattolica University, Italy
Daryl Pritchard,
The Personalised Medicine Coalition: Developing Strategies for the Integration of Personalised Medicine in Health Care Practice
Science Policy at PMC, USA
Winfried Schlee,
International Tinnitus Research – Novel approaches in Personalised Medicine Research, Teaching and Treatment - The ESIT Project
The ESIT Consortium
SESSION: Building an efficient entrepreneurial ecosystem supporting health innovation
Chairs: Dr. André Albergaria & Dr. Salah Dine Chibout
This session focused on the importance to bridge the gap between research and innovation based on a better cooperation between academia and industry. Solutions were presented on how the transfer of clinical and biomedical research to routine healthcare can be facilitated and organised through an ecosystem supporting partnerships and collaborations. Additionally, the session showed how medical education will improve collaboration and research through mutual understanding and allow a better and more complete flow of information in translating biomedical discoveries into clinical practices.
Introduction by Dr. André Albergaria & Dr. Salah Dine Chibout
Vjera Magdalenic-Moussavi
Building bridges – How do collaborations between industry and academic can Close the gap in Innovation
Director of Industry Partnerships and Commercialisation, Medicine at Imperial College London, UK
Magda Chlebus
The power of collaboration
Executive Director for Science Policy and Regulatory Affairs of The European Federation of Pharmaceutical Industries and Associations (EFPIA), Belgium
Panel Discussion:
Vjera Magdalenic-Moussavi, Imperial College London, UK
Magda Chlebus, EFPIA, Belgium
Fabrice André, Gustave Roussy, France
Aurélie Grienenberger, Eligo Bioscience, France
SESSION: Personalised medicine, an opportunity to redefine value in healthcare by incorporating patient preference and socio-economics aspects
Chair: David Haerry
Healthcare systems face rising costs due to technological developments, increasing number of patients with chronic diseases and expensive personalised medicine treatments. Additionally, healthcare systems should be based on solidarity and guarantee an equitable access to care. The session showed novel approaches to value assessment beyond conventional cost-effectiveness analysis and centred on patient preferences. As the notion of value still differs between citizens, patients, healthcare providers, health professional, industry but also healthcare systems, it is necessary to define a comprehensive meaning of value. The session welcomed health economists and national authorities to provide insight on how personalised medicine will be valued in future healthcare systems on emerging issues as access, costs, prices and reimbursement.
Introduction by David Haerry
Axel Mühlbacher
Patient Involvement in Healthcare Decision Making: Is there a rationale for considering patient preferences?
Institute for Health Economics and Health Care Management, Hochschule Neubrandenburg, Germany & Duke University, USA
Anne Böhmer representing Wiebke Löbker
Strengthening Training of Academia in Regulatory Sciences – Introduction into CSA STARS
Head of Unit Innovation, Change management / Personal advisor to the president of the BfArM Federal Institute for Drugs and Medical Devices, Germany
Panel Discussion:
Axel Mühlbacher, Hochschule Neubrandenburg, Germany & Duke University, USA
Anne Böhmer, BfArM & CSA STARS, Germany
Serena Scollen, ELIXIR
SESSION: The Challenges to a Personalised Medicine Approach for infectious diseases – Lessons learned from the COVID-19 pandemic
Chair: Prof. Eric Solary
This session highlighted the opportunities offered by personalised medicine to fight infectious diseases through lessons learned from the COVID-19 pandemic. We discussed the latest scientific advances in diagnostics about the severity and susceptibility of COVID-19 infections and their association with certain gene variations found in the population. Research in -omics is therefore essential to the understanding of this pathology. A major challenge in the management of the disease will be to evaluate the kinetics of the disease and the risk of progression to more severe forms. Taking together, this knowledge would allow to decipher biological pathways involved in disease susceptibility and progression in order to test and develop or reposition drugs specifically targeting those biological pathways or clinical forms that could work, not only in patients with specific genetics changes, but also for the entire population. In this way, the management of COVID-19 patients ideally goes beyond a simple “one disease, one treatment” but towards “a disease with a clinic-biological form, a particular kinetics and therefore a particular treatment”.
We discussed about the importance of multidisciplinary approaches and the necessity of the implementation of “bed to the bench” research as already supported by personalised medicine approaches, particularly in the rare disease and cancer field. We showed how intersectoral synergies and coordinated databases stimulate research and could help developing knowledge on the disease and translation to the clinics. The relevance of biological and genetic data collection as well as follow-up capabilities have be outlined.
Moderation by Eric Solary
Jacques Fellay, École Polytechnique Fédérale de Lausanne (EPFL), Switzerland
Alberto Mantovani, Istituto Clinico Humanitas
Oliver Cornely, University Hospital Cologne, Germany
Guy Cochrane, EMBL-EBI, European Open Science Cloud, European COVID-19 Data platform
Panel Discussion:
Eric Solary
Jacques Fellay
Alberto Mantovani
Oliver Cornely
Guy Cochrane
Session: Conclusion and Outlook
Monika Frenzel, French National Research Agency (ANR), ICPerMed Secretariat
Eduardo Cazap, Latin American & Caribbean Society of Medical Oncology SLACOM, Scientific Committee
Ejner Moltzen, Innovation Fund Denmark, Chair of ICPerMed
