Stakeholder forum
The TEHDAS joint action invited stakeholders across Europe to join the discussion on the European Health Data Space and how to make better use of health data in the future.
TEHDAS, the joint action Towards the European Health Data Space, advances more extensive use of health data across Europe. The project supports the European Commission’s aim in creating a harmonised internal market for health data. Our work provides elements to the European Commission’s forthcoming legislative proposal on the Health Data Space.
Connecting and engaging European stakeholders is a priority for TEHDAS. To continue the pan-European discussion, we gathered stakeholders from academia, business, public sector and NGOs to the digital Stakeholder forum on 27 October 2021.
The programme included discussions and case examples on the use of health data for policy-making, research, innovation and business. We focused on the European co-operation in digital health and outlined concrete steps to move forward with more extensive use of health data in Europe. The role of individuals in sharing their health data was also addressed.
The digital event was free of charge but required prior registration.
Read the news item about the event added on 28 October 2021.
#TEHDASforum
Programme
Please note that the time indicated is Central European Time.
| Time (CET) | Programme |
|---|---|
| 14.00 | Welcome words by Sitra Markus Kalliola, Project Director, Health Data 2030, Sitra Saara Malkamäki, Specialist, Health Data 2030, Sitra |
| 14.10 | EU Greeting Martin Seychell, Deputy Director-General, Directorate-General for International Partnerships, European Commission |
| 14.20 | Thematic discussion: European co-operation in digital health Coen van Gool, Head of WHO collaborating centre for the Family of International Classifications (WHO-FIC), Epidemiologist/Psychologist at Centre for Public Health Forecasting (RIVM) Henrique Martins, Associate Professor, ISCTE – Lisbon University Institute Ain Aaviksoo, Chief Medical Officer, Guardtime Health |
| 14.50 | Thematic discussion: Baby steps or giant leap in health data use – how to move forward concretely? Enrique Bernal-Delgado, Senior Scientist, Head of Data Science for Health Services and Policy Research unit, Institute for Health Sciences in Aragon (IACS) Anders Bjartell, Professor in Urology, Lund University, Senior Consultant, Skåne University Hospital Peter Arlett, Head of Data Analytics and Methods Task Force, EMA Josep Figueras, Director of the European Observatory on Health Systems and Policies |
| 15.20 | Thematic discussion: Challenges and opportunities in engaging people within secondary use of health data Louisa Stüwe, eHealth Directorate, French EU Presidency, Ministry of Health France Rosie Richards, Assistant Director, NHS Confederation, European Office Lars Münter, Head of International Projects Unit, Danish Committee for Health Education Minna Anttonen, Executive Director, Association of Cancer Patients in Finland |
| 15.50 | Break |
| 16.10 | Fireside chat: Citizen perspective Birgit Bauer, Digital Health & Social Media Expert Jyrki Kasvi, Former Finnish MP & Tech influencer |
| 16.35 | Fireside chat: Industry perspective Teemu Suna, Co-founder & CEO, Nightingale Health Samuel Myllykangas, Executive Director, Global Specialty Genetics, Quest Diagnostics, and General Manager, Blueprint Genetics |
| 17.00 | Closing words |
Speakers
Martin Seychell
Deputy Director-General, Directorate-General for International Partnerships, European Commission
Mr Seychell is a graduate in chemistry and pharmaceutical technology. He occupied the post of Head of Directorate for Foodstuffs and Chemicals at the Malta Standards Authority between 2001 and 2006, and that of Director of Environment Protection at the Malta Environment and Planning Authority between 2006 and 2011.
He was appointed Deputy Director General for Health and Consumers at the European Commission in March 2011. Between 2014 and 2020 he was Deputy Director-General for Health in the Health and Food Safety Directorate-General (SANTE), responsible for directorates dealing with public health and health systems and products, covering a number of policy areas including health security, health systems, pharmaceuticals, medical devices, tobacco control and digital health. He also represented the Commission on the Management Board of the European Centre for Disease Prevention and
Control (ECDC) between 2011 and 2020.
He was appointed Deputy Director General responsible for Directorates G & R (Human
Development, Migration, Governance and Peace (G), and Resources (R) in DG INTPA in June 2020.
Coen van Gool
Head of WHO collaborating centre for the Family of International Classifications (WHO-FIC), Epidemiologist/Psychologist at Centre for Public Health Forecasting (RIVM)
Coen H. van Gool works as a project lead for the National Institute for Public Health and the Environment (RIVM) in the Netherlands. Besides his involvement in Work Package 5 on governance of the JA TEHDAS, he heads the WHO collaborating centre for the Family of International Classifications in the Netherlands. Being convinced that better (exchange of) health data leads to better health information, he participates in several health information standardization initiatives, both nationally and internationally. Coen has a background in both psychology and epidemiology.
Henrique Martins
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.
Ain Aaviksoo
Chief Medical Officer, Guardtime Health
Ain Aaviksoo, MD MPH is the Chief Medical Officer of Guardtime Health. Prior to this he worked as Undersecretary for E-services and Innovation for the Estonian government overseeing the digital transformation and innovation of health care, labour and social matters.
Dr Aaviksoo obtained MD from University of Tartu and MPH from Harvard University.
He has earlier work experience as a physician, senior level civil servant, international level consultant on large system transformation and technology adoption in healthcare, health policy researcher, CEO of public policy think-tank Praxis and as a health-tech entrepreneur.
Dr Aaviksoo has published over 20 peer-reviewed articles and contributed into several book chapters on health policy and e-health, he is also regularly presenting as invited keynote speaker on digital services and health care innovation at international events. He is lecturing in various universities on innovation and technology in healthcare.
Enrique Bernal-Delgado
MD PhD, Senior Scientist, Head of Data Science for Health Services and Policy Research unit, Institute for Health Sciences in Aragon (IACS)
Enrique Bernal-Delgado MD PhD is also Master in Public Health and Master in Health Economics. After a period as Visiting Scholar at The Dartmouth Institute (Dartmouth Medical School, NH, USA), he founded the Data Sciences for Health Services and Policy research group at the Institute for Health Sciences in Aragon (IACS) where currently holds the position of senior scientist.
His research, building on the secondary use of real-life data, aims a) the study of unwarranted variations in health systems performance; b) the comparative effectiveness of complex interventions delivered to chronic and fragile populations; and, c) the development of methodology and technologies for the reuse of massive real world data.
Anders Bjartell
MD, PhD FEBU – EAU & BioMed Alliance, Professor in Urology, Lund University, Senior Consultant, Skåne University Hospital
Currently board member of the EAU Guideline office and Chairman of the EAU Research Foundation. Professor in clinical urology and senior consultant at one of the largest urology departments in Scandinavia. Long-term experience in translational and clinical prostate cancer research and as coordinating partner for Lund University in several EU sponsored programs since 1996 including the IMI funded Prostate PIONEER on the use of Big Data for prostate cancer outcomes. Also, he is a member of another IMI funded project called OPTIMA as a clinical expert, which involves the use of AI for treatment of solid cancer tumours (prostate, breast and lung cancer). Six years’ experience as vice-dean at the Medical Faculty Lund University responsible for outcome of governmental funding of research at university hospitals. Vast experience in clinical and translational prostate cancer research, biobanking and national principal investigator in several global phase III clinical trials in prostate cancer.
Peter Arlett
Head of Data Analytics and Methods Task Force, EMA
Co-chair HMA-EMA Big Data Steering Group
Honorary Professor, London School of Hygiene and Tropical Medicine
Education:
• Qualified in Medicine from University College London (UCL) (1991).
• Member of the Royal College of Physicians (MRCP) of London (1994).
• Fellow of the Faculty of Pharmaceutical Medicine (FFPM) of the Royal College of Physicians of London (2007).
• Fellow of the Royal College of Physicians of Edinburg (2017)
• Honorary Professor, London School of Hygiene and Tropic Medicine (2020)
Career to date:
• Head of Data Analytics and Methods Task Force (March 2020 – present).
• Head of Pharmacovigilance and Epidemiology Department, European Medicines Agency (2013–2020).
• Head of Pharmacovigilance and Risk Management Sector, European Medicines Agency (2008-2013).
• Principal Administrator, Pharmaceuticals Unit, European Commission (2003-2008).
• UK delegate to the European Committee for Human Medicinal Products (CHMP) (2001-2003).
• Specialist Assessor and Manager, Medicines Control Agency (now MHRA) (1996-2001).
• Hospital Physician, UK NHS: UCL, Oxford, Hammersmith (to 1996).
Josep Figueras
Director of the European Observatory on Health Systems and Policies
Josep Figueras, MD, MPH, PhD (econ), FFPH is the Director of the European Observatory on Health Systems and Policies. In addition to WHO, he has served major multilateral agencies such as the European Commission and the World Bank, and has worked as a policy advisor in more than 40 countries in the European Region and beyond. He is a member of several governing, advisory and editorial boards including the European Health Forum Gastein and is Cochair of the Scientific Board for the Monti Commission. He is an honorary fellow of the UK Faculty of Public Health, received the Andrija Stampar Medal for excellence in Public Health and a Doctorate Honoris Causa from Semmelweis University. His research focuses on comparative health system and policy analysis and has produced several volumes in this field.
Louisa Stüwe
eHealth Directorate, French EU Presidency, Ministry of Health France
Louisa Stüwe is eHealth project lead at the French Ministry of Health to support the French Presidency of the Council of the EU during the first semester of 2022, transitioning from her role as international policy manager at the French Health Data Hub where she is in charge of international policy and partnerships, including the French contribution to the European Health Data Space.
Before joining the Health Data Hub, Louisa managed health, research and innovation programs and activities, funding, policy, projects and networks at the Pan American Health Organization/WHO, the French Ministry of Health and the World Bank Group. She has also experience in the pharmaceutical sector and consulting in other sectors. Louisa studied Public Administration and International Politics at Sciences Po Paris and Georgetown University as well as Public Health at the French School of Public Health (EHESP). She has taught several health policy-related courses at Sciences Po Paris and EHESP.
Lars Münter
Head of International Projects Unit, Danish Committee for Health Education
Lars Münter is a dedicated champion for self-care in Europe. As part of his work in Scandinavia and Europe, knowledge sharing and joint platforms to promote health literacy, empowerment, and citizen action – including corporate social responsibility – has been daily activities across sectors and borders for 15 years.
As Head of International Projects in the Danish Committee for Health Education, he’s dedicated to practical initiatives and systems leadership to support change: Eg in Denmark, this also involves coordinating the Danish Council for Better Hygiene; in the Nordics it includes being Communications Lead for the Nordic Health 2030 Movement, and in Europe he’s been running the annual Self-Care Week Europe connecting stakeholders, themes, and organizations.
Rosie Richards
Assistant Director, NHS Confederation, European Office
Rosie is Assistant Director for European Digital and Research Policy at the NHS Confederation. The NHS Confederation is a membership organisation that brings together, supports and speaks for the whole healthcare system in England, Wales and Northern Ireland. Rosie is also a champion for Understanding Patient Data, an initiative that aims to make uses of health data more visible, understandable and trustworthy. In addition, she holds the roles of UK National Contact Point for the EU Health Programmes and the UK Representative to the EU Joint Action Towards a Health Data Space where she plays a leading role in both the citizen engagement and governance work programmes.
Minna Anttonen
Executive Director, Association of Cancer Patients in Finland
Minna Anttonen is currently Executive Director at the Association of Cancer Patients in Finland, and she has extensive experience in working in different associations for over ten years. She is also a member of the Steering Board in iCAN – Digital Precision Cancer Medicine Flagship. Anttonen holds a Masters of Arts degree (history, cultural studies, archeology) and is also a qualified teacher (adult pedagogy). She has furthermore accomplished the EUPATI programme (The European Patients’ Academy on Therapeutic Innovation) and the specialist vocational qualification in Leadership and Business Management.
Birgit Bauer
Digital Health & Social Media Expert
Birgit is German and works with a Business Partner in the company, the Manufaktur für Antworten UG. Birgit works as Social Media and Digital Health Expert, Journalist and Speaker with a more than 16 years’ experience and a specialisation in Healthcare, developing Workshops and Talks about the use of Social Media for Target Groups e.g. Patients, Patient Organisation, NPO, Industry and BioTech Companies, Start-Ups and governmental institutions.
Birgit aka @Birgitpower on Twitter is one of the most influential Blogger about Multiple Sclerosis and Healthcare in Germany and Europe. She started her Blog “Fast normal! Mein Leben mit MS” – “Almost normal – My Life with MS” in 2007.
Jyrki Kasvi
Former Finnish MP & Tech influencer
Jyrki Kasvi is a former member of the Finnish Parliament representing the Green League, but he is also a former game journalist and researcher. He has written several books about computers and information society. He has a PhD in Engineering from the Helsinki University of Technology. Kasvi was diagnosed with bladder cancer in 2003 and writes a blog in Uusi Suomi – a media of political news – where he shares his thoughts on his condition, health care and politics.
Teemu Suna
Co-founder & CEO, Nightingale Health
Teemu Suna is one of the founders and CEO of Nightingale Health, a Helsinki-based biotech company, reinventing preventive health with blood-based health data. During the past five years, Suna has steered Nightingale into a publicly listed growth company with customers in over 20 countries. He has over 15 years of experience in management positions, having previously served as Chief Technology Officer at Fujitsu Finland. As a passionate advocate for visionary healthcare solutions, Suna leads Nightingale on its mission to solve the burden of chronic diseases by empowering people to follow-up on their own health and take actions to stay healthy.
Samuel Myllykangas
Executive Director, Global Specialty Genetics, Quest Diagnostics, and General Manager, Blueprint Genetics
Samuel is the Executive Director of Global Specialty Genetics at Quest Diagnostics and General Manager at Blueprint Genetics as well as a co-founder of the company. He is an expert in genome analysis technologies and has extensive experience in bioinformatics and cancer genomics research. Samuel received his PhD from the University of Helsinki and completed his postdoctoral research at Stanford University. He is an adjunct professor in genetics at the University of Helsinki, an author of several high-impact publications, and an inventor and patent holder of DNA sequencing methods.
Programme is subject to change.
For more information, please contact tehdascoordination@sitra.fi.
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