TEHDAS Stakeholder forum 2023
The TEHDAS joint action invites experts, professionals and decision-makers in health sector across Europe to the final event of the project to learn about the results and to discuss the development of European health data space. The hybrid event will take place on 14 June 2023 in Helsinki, Finland and online.
At the forum, we will focus on the current developments of the European health data space. We will learn about the TEHDAS results on data quality and infrastructure, data governance, citizens’ views on data use, as well as the sustainability of the health data space. We will also broaden the discussion from the European health data space to global health perspectives. In addition to TEHDAS partners, a broad range of stakeholders will share their views.
TEHDAS, the joint action Towards the European Health Data Space, is coming to an end. TEHDAS project has been carried out by 25 European countries since 2021. Connecting and engaging European stakeholders from academia, business, public sector and NGOs has been a priority for TEHDAS.
The project advances more extensive use of health data across Europe. The European health data space (EHDS) will promote the development of health systems, and the availability, efficiency and sustainability of services. Research and innovation will benefit from improved access to data.
Our work provided elements to the European Commission’s legislative proposal on the EU’s health data space published in May 2022. Towards the end of the project, we will give recommendations to facilitate successful implementation of EHDS. TEHDAS supports the European Commission’s aim in creating a harmonised internal market for health data.
The event is free of charge but requires prior registration. The forum is held as hybrid event in Messukeskus Helsinki Expo & Convention centre.
The forum is an official side event of Radical Health Festival Helsinki, a digital health conference which takes place in Helsinki on 12-14 June 2022. In case you want to join the conference as well, you can contact firstname.lastname@example.org for a ticket discount code.
Read the news item of the forum.
10.00-13.00 EEST (HELSINKI TIME) / 9.00-12.00 CEST
MESSUKESKUS HELSINKI EXPO AND CONVENTION CENTRE, RAUTATIELÄISENKATU 3, SIIPI ENTRANCE, 00520 Helsinki, FINLAND & ONLINE
|Doors open & coffee for participants on site
Jyrki Katainen, President of Sitra
Moderator: André Noël Chaker
|5+1 success factors behind TEHDAS
Markus Kalliola, Project Director & TEHDAS Coordinator, Sitra
|TEHDAS results: Data quality framework & Infrastructure
Introduction to results
Enrique Bernal-Delgado, Senior scientist in Health Services and Policy Research, Institute of Health Sciences in Aragon & Klara Lundgren, Information Security Manager for Health Data, Norwegian Directorate of e-health
Front row comments by stakeholders: Fia Westerholm, European Medicines Agency & Jacqui van Rens, European Cystic Fibrosis Society
|TEHDAS results: Governance & Citizen perspectives
Introduction to results
Michel Silvestri, Head of Unit, Swedish eHealth Agency & Louise Mathieu, Researcher, Sciensano
Front row comments by stakeholders: Susanna Flaherty, IQVIA & Jaanus Pikani, Scanbalt
|TEHDAS results: Sustainability of the European health data space
Introduction to results
Tapani Piha, Senior Advisor, Sitra & Henrique Martins, Associate Professor, ISCTE – Lisbon University Institute
Front row comments by stakeholders: Alan Fraser, Biomedical Alliance in Europe & Hille Hinsberg, Product Manager, Proud Engineers, Estonian Connected Health Cluster
|Coffee break & networking for participants on site
Future of personalised health
Antonio Estrella, Author & Strategic Futurist
Taking a broader view – Global health
Elizabeth Kuiper, Associate Director and Head of the Social Europe and Wellbeing programme, European Policy Centre
Sirpa Pietikäinen, Member of the European Parliament
Antonio Estrella, Author & Strategic Futurist
Mario Jendrossek, European Projects Lead, French Health Data Hub
Tommi Nyrönen, Director, ELIXIR Finland Head of Node, CSC – IT Center for Science
Mélodie Bernaux, Policy Officer, DG SANTE, European Commission
Markus Kalliola, Project Director, Sitra
André Noël Chaker
|The online event ends
Networking for on-site participants
The programme is subject to changes.
Author & Strategic Futurist
Based in Singapore, Tony is an author, strategic futurist, and business builder focusing on Personalized Health and Health Equity globally through Taliossa. His thought leadership on the future of health has led to speaking invitations by the BBC, the Singapore Writers Festival, and by the United Nations Conference on Trade and Development. He is currently working on a new book on Health Equity on the mindset shift from the private sector required to address health inequality.
Tony actively works globally with insurance, pharma, diagnostics, and technology organizations to build ecosystems of change that include innovative digital health solutions. Prior to Taliossa, Tony led health innovation for MetLife Asia, worked at Pfizer, and has had numerous roles across many startups including as a Founder, Independent Board Director, CEO Coach, and Strategic Advisor.
Associate Director and Head of the Social Europe and Wellbeing programme, European Policy Centre
Elizabeth Kuiper is Associate Director and Head of the Social Europe and Well- being programme at the European Policy Centre. Her focus is on Social Europe, EU health policy and further developing the concept of the economy of well-being, linking up the EPC’s research on health care, gender issues, social equality, sustainability and economic governance.
Before joining the EPC, Elizabeth was Executive Director Public Affairs at the European Federation of Pharmaceutical Industries and Associations (EFPIA), where she was leading the organisation’s external engagement. Amongst others, she led the industry’s Brexit Task Force and created the Brexit4Patients multistakeholder coalition.
Previously she worked as attaché at the Permanent Representation of the Netherlands to the EU in the field of health. Prior to this, Elizabeth worked amongst others as political adviser to the Minister of Health, Welfare and Sports in the Dutch cabinet Balkenende-IV.
A Dutch national, she is fluent in English, French, and German.
Finnish Member of the European Parliament
Sirpa Pietikäinen, M.Sc. (Econ.), a Finnish Member of the European Parliament, representing the European People’s Party (EPP) since 2008. Former Minister of Environment and a Member of the Finnish Parliament.
Among her many duties, she is actively working in the Economic and Monetary Affairs Committee (ECON) and the Environment and Public Health Committee (ENVI). She started to work with health and digitalization issues in 2009 and since then has been active promoter for EU´s health technology and how to make it accessible for everyone and how EU will be globally in forefront in developing and using AI based diagnostics, gene therapies and personalized medicines. EU´s health data space is a promising beginning to full fill all these goals: better care for patients, faster development of science, better medicines and also business opportunities.
Associate Professor, ISCTE – Lisbon University Institute
Henrique Martins, MD, PhD, MLaw, FIAHSI is Associate Professor in Health Management, Leadership and Digital Health at FCS-UBI, ISCTE-IUL. He is the past co-chair of the eHealth Network and was president of SPMS, Portugal’s Digital Health Agency for about 7 years. He co-leads ISCTE-HEALTH, is member of several advisory boards, and member of the Board of Directors of HL7 Europe Foundation.
He works as academic and providing independent consultancy in digital health to governments, international organizations and projects. He is currently a coordinator of the XpanDH EU-funded project on the European EHRxFormat.
Policy Officer, DG SANTE, European Commission
Dr Mélodie Bernaux, MD, MPH, MSc, is a medical doctor specialised in public health and policy officer, seconded national expert in the digital health unit of the Directorate General for Health and Food Safety (SANTE C1) of the European Commission.
Before joining the European Commission, she was responsible for the European health data space regulation and European ethical principles for digital health in the Digital health delegation of the French ministry of Health.
Previously, she served as medical officer for human reproduction, embryology and genetics at the Directorate General for Health of the French ministry of health, where she led the 2021 revision and application of the French bioethics laws for all aspects related to medically assisted reproduction, genetics, the implementation of artificial intelligence in healthcare and medical care of intersex children. She was also an active member of the Council of Europe’s Bioethics Committee, where she chaired the working groups on intersex children and public dialogue on genomic medicine.
She joined the French ministry of health from Greater Paris University Hospitals where she was responsible for a number of strategic projects involving the secondary use of healthcare data, including the COVID data task force.
Head of Finland node in the European Life Science Infrastructure for Biological information ELIXIR & Director at CSC – IT Center for Science
Dr. Tommi Nyrönen Ph.D. is the head of Finland node in the European Life Science Infrastructure for Biological information ELIXIR and director at CSC – IT Center for Science in Finland. He is a workstream in the Global Alliance for Genomics & Health, and a technical working group co-chair in the EU 1+ million genomes initiative. The focus of Finnish participation in European biomedical infrastructures is in the unique expertise and data resources in genomic research, and provision of IT services and training for analysis of high-quality biological and biomedical information. Nyrönen is an author of more than 50 scientific articles including patents and software in structure-based drug discovery and a co-founder (200) of a former bioinformatics start-up. He is an adjunct professor in computational drug discovery at the University of Helsinki, and a past by-fellow in bioinformatics at the Churchill college, University of Cambridge.
Information security manager for Health Data, Norwegian Directorate of e-health
Klara Lundgren is the information security manager for Health Data in the Norwegian Directorate of e-health and the last two years she has supported the Health Data Access Body (Helsedataservice) in security related matters. She has been working with information security both for the private and public sector since 2006 focusing on security risk and control.
Louise Mathieu is currently working as a researcher at Sciensano, the Public Health Research Institute of Belgium. She studied law in France and Spain before pursuing an MSc in Global Health Law and Governance in the UK. Her strong interest in public health and ethics lead her to join the Ethics and Public Engagement team at Sciensano. This team focuses on conducting citizen engagement initiatives on health-related topics, to identify ethical, legal and societal issues at stake from a citizen perspective, and build policy recommendations at national and European level.
Sciensano is representing Belgium within the TEHDAS Joint Action. The ethics and public engagement team has been involved in part of the WP8, focusing on conducting a citizen e-consultation to build recommendations for the EU Commission on how to engage citizens in the secondary use of health data.
Head of Unit, Swedish eHealth Agency
Dr Michel Silvestri is Head of Unit at the Coordination Department of the Swedish eHealth Agency, which according to its government assignment aims to contribute to improved healthcare, social care and the country’s health by pursuing the development of national e-health infrastructure and interoperability.
Michel received his doctorate in immunobiology from the Karolinska Institute in 2000 and as Senior lecturer he held various positions at the Karolinska Institute.
During the years 2001-2007, Michel was President of the Swedish Institute of Biomedical Laboratory Science, and 2018-2022 Michel was member of the Board of Directors of the Swedish Association of Health Professionals.
Between 2016 and 2019 Michel was also head of the Medical Laboratory Centre of Gotland. Michel has been an elected member of the Stockholm County Council, during the years 2014-2017 with in the Health and Medical Board as well as the Research and Development Committee.
At present Michel is responsible for the Swedish eHealth Agency’s role as national competent authority in the TEHDAS as well as the X-eHealth consortia. Michel is also member of the Policy Board of the Nordic Health Data Commons, and responsible for a government assignment on the development of a national health data space.
In summary, Michel has experience from Life Science and Healthcare, Higher Education and Research, Project Management, Public and Governmental Administration, Politics and Policymaking.
Senior scientist in Health Services and Policy Research, Institute of Health Sciences in Aragon
Enrique Bernal-Delgado holds the position of senior scientist at the Institute for Health Sciences in Aragon (IACS). He holds a PhD in Sociology from the University of Zaragoza, Spain and a Master Degree in Health Economics from the Universities of Barcelona and Pompeu Fabra, Spain. He founded the Data Sciences for Health Services and Policy research group at IACS after a period as Visiting Scholar at The Dartmouth Institute (Dartmouth Medical School, NH, USA).
Bernal-Delgado is also principal investigator of the Atlas of Variations in Medical Practice in the Spanish National Health System and the European Collaborative for Healthcare Optimization –ECHO. Both projects have raised his interest on the use of Real World Data to inform policy making. Currently, he is editor-in-chief of the Spanish Atlas of Variations and associate editor of BMC Health Services Research.
European Projects Lead, French Health Data Hub
Mario Jendrossek is European projects lead at the French Health Data Hub (HDH). He has previous work experience through positions in the area of health research and health policy. He has worked in international organizations, public administrations, civil society and the private sector.
In his current capacity at the French Health Data Hub, he is responsible for building partnerships with European partner organizations, monitor and contribute to legislative files such as the European health data space regulation as well as managing the HDH’s involvement in projects co-funded by the EU. He manages the HDH’s work on the HD@EU pilot project for which the HDH is Coordinator. The project aims to build and test a first version of the cross-border infrastructure for secondary use of health data, foreseen in the EHDS regulation (“HealthData@EU).