Kooperation | In Kooperation mit: Roche Pharma AG

Videoaufzeichnung des Events

Forschung im Bereich der öffentlichen Gesundheit und gemeinsame Nutzung von Daten

Wie sieht die künftige Gesundheitsdatenlandschaft in Europa aus und wie müssen Infrastruktur, Technologie und Interoperabilität für datengeschützte Rahmenwerke beschaffen sein? Wie funktionieren Zusammenarbeit und Datenaustausch um Fortschritte in der Präzisionsmedizin zu erzielen? Sehen Sie hier beide Teile der Aufzeichnung mit anschließenden Diskussionen und Wrap-ups. Sie können sich weiter unten auch alle Vorträge/ Diskussionen einzeln ansehen.

Veröffentlicht: 08.09.2021, 16:00 Uhr

Part 1

Fundamentals of health data sharing: key to accelerate personalized healthcare

Part 2

National initiatives on health data sharing: key to drive innovation in joint undertakings

Introduction

Dr. Martin Hager holds a doctorate from Freiburg University in Germany and completed his medical research fellowship program at Harvard Medical School and the Dana-Farber Cancer Institute as a U.S. Department of Defense scholar.

For the past 10 years Martin has been focused on bringing innovation to cancer patients and held various positions in the pharmaceutical industry. In his present role he is heading personalized healthcare in Medical Affairs at Roche Germany.

Unlocking the potential of health data to make personalized healthcare a reality

Essentials of health data sharing

**Prof. Dr. Bettina Borisch**
© Hélène Tobler

Dr. Borisch is an MD and a Histopathologist, MPH and Fellow of the Royal College of Pathology (UK). Her scientific research work delves into neoplastic lesions of the immune system and breast cancer. Her interests also include community-based oncology, health communication and global health. She studied medicine and history at the Universities of Kiel (Germany) and Lausanne (Switzerland). She is appointed professor and head of the Institute of Clinical Pathology / University of Geneva in 1995. She becomes the president of the Swiss Cancer League’s program against breast cancer. She completes an MPH in 2005 and orientates her activities to Public Health and Global Health. She joins the Institute of Social and Preventive Medicine in 2005 (from 2015 on: Institute of Global Health).

She was Editor in Chief of „Pathobiology“ until 2020 and the Co-Editor of „Journal of Public Health Policy“. In addition to her academic work she acts as the Director and Head of the World Federation of Public Health Associations and holds positions at several Committees of Public Health oriented institutions. She was president of Europa Donna – The European Breast Cancer Forum and Founding President of the Swiss Forum of Europa Donna. She teaches at the University of Geneva, the Swiss School of Public Health and she also teaches patient support groups. She is (co)author of over 120 scientific papers.

Public health research and data for a learning health system

Thomas Berlage is Institute Director at the Fraunhofer Institute for Applied Information Technology FIT in Sankt Augustin and professor of Computer Science at RWTH Aachen University since 2002. At FIT, he is directing the Digital Health Department. His research encompasses intelligent data and image analysis, data integration and digital health applications in drug discovery, diagnostics and translational medicine. Thomas Berlage is technical coordinator of the Medical Data Spaces Initiative of Fraunhofer Society and has recently been instrumental in shaping the genomDE initiative of the German Ministry of Health.

Infrastructure, technology and interoperability for data-enabled frameworks

Ioana Gligor is Head of Unit in DG SANTE, responsible for Digital Health and European Reference Networks. Ioana worked previously on health issues in DG Employment, with a focus on the European Semester and European Social Fund. Before joining DG SANTE, she worked in the Secretariat General of the European Commission, in DG Employment and Social Affairs and she started her career in European Institutions in the Cabinet of Commissioner Orban. Before joining the EU institutions, Ioana worked in the Romanian Ministry of European Integration and was spokesperson for the Chief Negotiator with the EU.

She studied political sciences and EU affairs, with a specialisation at the College of Europe in the law and economics of internal market. She has a PhD in international relations.

A common European Health Data Space: A bold vision for healthcare in Europe

Markus Kalliola is the project director in Health data 2030 project in The Finnish Innovation Fund Sitra and the coordinator of Joint Action Towards The European Health Data Space (TEHDAS). Prior to Sitra he worked in the European Commission in DG Health and food safety where he was responsible of the cross-border healthcare IT projects. Mr. Kalliola has vast experience in data economy and in the next years he will work towards healthier and fairer data economy for Europe as well as towards more competitive health data ecosystem in Finland.

Mr. Kalliola holds a positions of trust in HMA-EMA joint big data steering group, HMA-EMA Darwin EU advisory board and DNV Digital health advisory board.

Europe’s future health data landscape: Towards an European Health Data Space

Since 2012, Denis Horgan has been the Executive Director of the European Alliance for Personalised Medicine (EAPM). The Alliance brings together European healthcare experts and patient advocates involved with major chronic diseases, with the aim of improving healthcare by accelerating the development, delivery and uptake of personalised medicine and diagnostics, through consensus.

1. Delivered EU and country Government Affairs strategy to successfully bringing 22 Member State to sign up the Million European Genome Declaration

2. Built a stakeholders affairs strategy to gain the support of 28 Member states that personalised medicine/healthcare should be a priority through the EU Council Conclusion on Personalised Medicine and Patient Access

3. Delivered successful Stakeholders strategy to improve cross border healthcare through the realisation of the EU Directive

4. Drove forward the stakeholders support for a public-private policy framework to support the Innovation Medicine Initiative (IMI I) to be transformed into IMI II - increasing this funding to 3.5 billion Euros.

5. Published over 50 academic publications in the area of personalise healthcare

Prior to setting up EAPM, Denis worked as the Brussels Director of the European Cancer Patient Coalition from 2009, as a policy advisor in the European Parliament on a broad array of health issues relating to the pharmaceutical area, access to healthcare and patient issues. Additionally, he has worked in international NGOs on health development projects in Afghanistan, Mexico and Palestine related to issues on health governance, education, HIV/AIDS awareness and access to healthcare

The way forward to improve data sharing for decision making

Panel discussion

Panel discussion

Birgit Bauer is Social Media & Digital Health Expert, Journalist, Patient Expert, Speaker and Blogger. With her business partner Birgit Bauer works at the „Manufaktur für Antworten UG“, has more than 15 years experience in health communication and is specialized in patient communication. Birgit Bauer lives with the diagnosis „multiple sclerosis“ since 2005. She has been blogging since 2007 on her blog: „Fast normal – mein Leben mit MS“ about MS and health topics and is known in Germany and Europe. As a Patient Expert, Birgit Bauer is active and supports various organizations, projects and professional groups, such as the EMSP - European Multiple Sclerosis Platform or „Data Saves Lives“ and is chair of the „Patient Advisory Group“ of the ESR - European Society of Radiology. She held a mandate as Co-lead (Patient and Customer Working Party) in the „Digital Media and Health Topic Group“ of the European Medicines Agency (EMA) from 2017 to 2019 and is a member of various technical and research groups on topics such as clinical trials and digital health solutions and contributes as co-author in various professional publications.

Dr. André Breddemann has been employed as a pharmacist in the medicines department of the BARMER health insurance since 2009. From 2016 to 2020 he was in charge for the contract activities as team leader. In the beginning of 2021 he was requested to take the lead as head of the department,and is therefore responsible for the contract activities and the ordinance management.

Enablers for collaborative and innovative frameworks and personalized health systems

Johanna Seppänen is Director of the new Finnish Social and Health Data Permit Authority, known as Findata, a one-stop shop for the secondary use of health and social data in Finland. Johanna Seppänen started out in Biometrics and is now an expert in developing public sector research infrastructures and member of the National Committee on Medical Research Ethics TUKIJA.

Findata: Requirements for secondary use of health data

Emmanuel Bacry currently serves as the Scientific Director of the French Health Data Hub. In parallel, he is a Senior Researcher at CNRS (French National Centre for Scientific Research) at Paris Dauphine University. For over 4 years, he served as the head of the Big Data & Data Science Initiative at Ecole Polytechnique. A national and international AI expert and general chair of various summer schools on AI and data science, Emmanuel Bacry is also a member of several French and international scientific boards and committees. Emmanuel holds a PhD in Mathematics from ENS (École normale supérieure de Paris) where he graduated in 1992. He additionally obtained his Accreditation to Supervise Research („Habilitation à diriger des recherches“) in 1996.

The Health Data Hub: Promoting data-driven health research and innovation

Prof Dr Hans (A.J.) Gelderblom is head of the department of Medical oncology at Leiden University Medical Center and chair of the LUMC Comprehensive Cancer Center.

He is former chair of the Dutch Medical Oncology Society and former board member of the EORTC and chair of the EORTC Soft Tissue and Bone Sarcoma Group. He was invited as one of the co-chairs of the Dutch molecular matched therapy DRUP study.

Advancing the journey in precision medicine through collaboration and data sharing for clinical deci

Panel discussion

Panel discussion

Wrap-up and closing remarks

Wrap-up and closing remarks

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Unlocking the potential of health data to make personalized healthcare a reality – Dr. Martin Hager

Public health research and data for a learning health system – Prof. Dr. Bettina Borisch

Infrastructure, technology and interoperability for data-enabled frameworks – Prof. Dr. Thomas Berlage

A common European Health Data Space: A bold vision for healthcare in Europe – Ioana-Maria Gligor

Europe’s future health data landscape: Towards an European Health Data Space – Markus Kalliola

The way forward to improve data sharing for decision making – Prof. Denis Horgan PhD; LLM, MSC, BCL

Panel discussion Part 1

Findata: Requirements for secondary use of health data – Johanna Seppänen, PhD

The Health Data Hub: Promoting data-driven health research and innovation – Dr. Emmanuel Bacry

Advancing the journey in precision medicine through collaboration and data sharing for clinical decision making – Prof. Dr. A.J. Gelderblom

Panel discussion Part 2

Prof. Dr. Bettina Borisch

Prof. Dr. Thomas Berlage