Joint Symposium

17- 18 November 2022, CUBEX ONE (Franz-Volhard-Str. 5, 68167 Mannheim)

EIT Health Germany-Switzerland and EIT Health Spain

Right to privacy vs. duty to protect lives: Health Data Management in Focus

In our age, leaving digital footprints is inevitable. Whether we shop online, count our steps or pay with our credit card, we generate data that is subsequently available to many interested parties. How this data can or should be used is the subject of various public discussions. When it comes to increasing security or gaining economic benefits, the thought of being looked through and monitored by unknown entities often makes people feel uncomfortable. Therefore, the sovereignty over one’s own data was legally recognised with the EU-wide introduction of the GDPR in 2016, regulating the issue of ownership and accessibility of data.

When it comes to the use of data in healthcare, these points and many other ethical aspects need to be considered. The digitisation of medicine allows the generation of qualitative and numerical data that could be highly valuable in research and the development of innovative healthcare solutions, such as AI-based or personalised systems.

Data save lives – Looking at European Solutions

While governments and healthcare organizations must protect patients’ rights over their personal and health data, there are strong ethical arguments to be made to facilitate this data for patients’ benefit. Finding the right balance between these two duties is the aim of some public-private initiatives. EU institutions are evaluating the installing of pan-European data systems to ensure sustainability and resilience of the European health system, and to react to growing pressure from industrial and educational stakeholders.

In May 2022, the European Commission responded to this pressure by proposing the European Health Data Space, a “health-specific ecosystem comprised of rules, common standards and practices, infrastructures and a governance framework”. This proposal aims at increasing individuals’ “digital access to and control of their electronic personal health data, nationally and cross-borders” while also “providing a consistent, trustworthy and efficient set-up for the use of health data for research, innovation, policy-making and regulatory activities”. EIT Health reacted to this proposal by publishing a statement, endorsing the efforts. EIT Health endorsed this proposal in its statement published on 5 May 2022. 

Another approach that stands in contrast to this centralisation-oriented proposal is the Gaia-X project, which aims to establish a system of rules that guarantee individual data owners to exchange data in a trusted environment and promote the creation of new shared data spaces to create a digital economy.

Mobilising the biggest European health network

These are questions that the EIT Health network regularly addresses when developing new solutions, introducing them into care systems and interacting with users. Contemporary products that use AI, personalised medicine, mobile services, and wearables must adhere to legal and ethical aspects in order to ensure trustworthiness. Since regulations vary on a national level, companies that develop data-driven healthcare products foster a close-knit network with institutions in several countries to match national requirements and sensitivities.

As a result of the discussions, a regional statement paper will be developed in several working groups with the involvement of high-level ethics speakers. This paper will subsequently be published as the position of the EIT Health networks Germany-Switzerland and Spain to be included in the public discussion.

Register via Eventbrite.

(Please note: Seating is limited. In case of full occupancy, registrations from EIT Health partners will be given preference.)

AGENDA

Call for abstracts: EIT Health Partners and interested stakeholders (expired)

We cordially invite our core and associate partners to contribute to this high-level discussion with their abstract, share their company’s experiences and approaches and get involved in the political debate. Submissions of abstracts focussing on any of the above-mentioned (and related) topics are invited from any EIT Health core or associate partner, associated with either EIT Health Germany-Switzerland or EIT Health Spain. We are also explicitly inviting all associated network partners and organisations from the respective local ecosystems in Germany, Switzerland and Spain to share their experiences.

Abstract submission deadline: 16 September 2022

Please download the template here and email your completed abstract to [email protected] by the due date. You will be informed in writing of whether your abstract has been selected for the programme and at what time your presentation is scheduled, no later than 6 weeks prior to the event.

Topics can include (non-exhaustive list):

• Chances of data usage in research
• Approaches and collaborations to match solutions to national requirements
• Building Transparency: Customer feedback and data transparency
• Expanding into different markets
• Digitation of Healthcare: new challenges as a result of data generation
• New positions: Ethics and Data managers
• New chances for patients: the potential in AI/Telehealth and wearables
• Changing Healthcare: bringing Care to the patients; chances and challenges
• Public-private collaboration for health data space
• Integration of healthcare, personal and social data in Electronic Health Records
• The challenge of interoperability: practices and standards applied to health data collection, processing and storage

Looking back at EIT Health Germany joint Symposium with EIT Health Innostars 2020