How will health data you personally generate be used in 2030?
How should data related to our health be handled? Who should be able to collect it, store it, process it and use it? And for which purpose(s)? To what extent are we generating health data ourselves, by using fitness trackers, health apps and other tools? How could this data serve for public health policies, healthcare services, commercial use or research purposes in the future? The past months of debate around contact tracing apps have underlined the need for a broader discussion on the use of personal health data.
With the project «Health Data Governance: What’s in it for Switzerland?» we at foraus and Sensor Advice are conducting this discussion throughout Switzerland. We are exploring how the potential of new digital health technologies can be fully leveraged to benefit society, while addressing existing challenges related to data privacy and security. We want to examine to what extent health data governance at the global level could benefit public health and how Switzerland should position itself internationally on this topic. To find innovative governance solutions and get out of traditional thinking patterns, we are therefore inviting you to explore with us the future of healthcare and the use of personal health data.
New digital health technologies and artificial intelligence-driven tools are progressively becoming part of our daily lives. Wearables, fitness trackers or mobile health apps are increasingly used. Technologies such as Continuous Glucose Monitoring System (CGM) for diabetics allow an instantaneous flow of information for specific vital signs. This in turn creates an immense volume of health-related data which is likely to transform our healthcare systems. Simultaneously, this data offers valuable prospects for research and business. Digital technologies and citizens’ health data can support governments in better addressing public health challenges such as spreading infectious diseases and contribute to achieving universal health coverage globally by 2030 (SDG n°3). But not only governments but also research and private companies could heavily benefit from the new, massive data flows. Personalized medicine is changing the way patients are managing their health condition, and the treatments they receive will be much more individually tailored in the future.
Yet, the use and exchange of personal health data bears risks. Depending on the measures which are taken (or not), they could be used in a discriminatory way. Through data breaches, sensitive personal information could be released. Questions remain unresolved regarding data ownership, exchange and usage, be it at the domestic or international level. The existing governance structures have been outrun by the rapid developments. Legal frameworks are too slow to catch up with digitisation. More recently, the World Health Organisation has set a first common vision for the use and exchange of health data at the global level through its Draft Global Strategy on Digital Health, but further reflection is needed regarding concrete implementation. At the Swiss level, the Federal Council acknowledged the importance of governing digital health technologies and the use and exchange of health data in the international context in the updated Swiss Health Foreign Policy 2019-2024. But how do we get from strategic goals to concrete implementation of measures and policies? In order to feed these goals with content, we invite you to start from the health data you personally generate, consider different areas of potential use and develop your own visions and action points to get there!
We would like you to imagine yourself living in 2030 and answer the following question: How will health data you personally generate be used in 2030?
You can choose one of the following four areas of use of health data to answer the question:
- Public health policy: The country's public health objectives.
- Healthcare services: Looking after your personal health.
- Commercial use: Leveraging the value of data to do private business and innovate.
- Research: Discovering new, and improving existing, medication and treatments.
Submit your proposals on Policy Kitchen or at any of the workshops below!
Are you curious to learn more about health data and existing regulations? Take a look at our background reader and get inspired for the challenge. If you want to learn more about our project, find our latest newsletter here (in German and French).
Using the collaborative online platform Policy Kitchen, as well as a series of physical and online workshops, foraus and Sensor Advice invite the public to address this question in an accessible, engaging and interactive process. We seek to bring together different perspectives, so join us and envision a future health data governance!
Before the workshop
Even before the workshop, you can - regardless of whether you participate in the workshop or not - record a vision on the Policy Kitchen platform. To do so, you need to register on Policy Kitchen.
The actual "visioning" phase of Policy Kitchen takes place during the workshop. Participants will be asked to formulate visions that should have the form of a short news article with a headline they would like to see (or not to see) in 2030 - for more information find our visioning template here. At the end of the visioning phase, the visions generated are published on the Policy Kitchen platform, with the authorship of the visions being stated. Please bring your own laptop.
After the workshop
Once the visions have been published on the Policy Kitchen platform, they can be developed further by the authors and receive feedback from platform visitors.
We will collect your visions until 16 September 2020. The project team will then cluster and evaluate these visions to develop policy recommendations to be included into a publication that is planned for December 2020.
If you are inspired by the topic, you can develop your experience, vision and ideas into a separate blog or policy paper to be published via foraus. We welcome your engagement in any capacity!
The workshops will be conducted in English. Participants may contribute in their language of choice and visions can be submitted in English, French or German. For our comfort, there is going to be an Apéro Riche at the physical events!
18h - 21h
Kerstin Denecke (Professor of Medical Informatics, Department of Medical Informatics, Berner Fachhochschule)
Adrian Schmid (Director of eHealth Suisse)
18h - 21h
Impact Hub Geneva
Rue Fendt 1
|Christian Lovis (Professor and chairman Division of Medical Information Sciences, University Hospitals of Geneva; Director of the Academic Department of Radiology and Medical Informatics, University of Geneva)||Christian Lovis|
18h - 21h
GGG Zunftsaal Schmiedenhof
Katrin Crameri (Director, Personalized Health Informatics Group, Swiss Institute of Bioinformatics (SIB))
William Archey (Medical Leader, Personalized Healthcare Partnerships, Roche Pharma (Switzerland) AG)
18h - 21h
Impact Hub Zürich - Viadukt
Alessandro Blasimme (Senior Scientist at «Health Ethics and Policy Lab», Department of Health Sciences and Technology, ETH Zurich)
Marc Stoecklin (Department Head at Security Research, Principal Research Scientist and Manager (RSM) in the Cognitive Cognitive Cybersecurity Intelligence (CCSI) group, IBM Research - Zurich)
18h30 - 21h
|Online on Zoom|
Sang-Il Kim (Head of Digital Transformation Division, Federal Office of Public Health)
Lisa Bachofen (President, Vereinigung Angehöriger psychisch Kranker- VASK Bern)
Jillian Oderkirk (Senior Analyst, Health Division, OECD)
Event partner: Swiss Commission for UNESCO
More on the workshop organizers
Sensor Advice stands for goal-oriented, personal consulting and support in policy, communications and organizational management. An interdisciplinary team of experienced practitioners and scientists works independently and in a network with the aim of effectively mediating between business, politics and society. The qualitative dialogue and discourse analysis is a basis for the development of sustainable strategies.
The independent think tank foraus publishes scientifically sound recommendations for action in the form of discussion papers, brief analyses and blog posts, and organizes high-profile debates with the aim of creating innovative solutions for tomorrow's foreign policy. foraus was founded in 2009 and, as a non-profit grassroots organization, has a comprehensive, nationwide and international network of volunteers.
This project is funded by Fondation Botnar
Fondation Botnar is a Swiss-based foundation which champions the use of AI and digital technology to improve the health and wellbeing of children and young people in growing urban environments. To achieve this, the foundation supports research, catalyses diverse partners, and invests in scalable solutions around the world.