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“Patients are more than data” – This was our Joint Symposium with EIT Health Spain!

2 days, 3 keynotes, 1 podium discussion, 9 abstract presentations, and 2 workshops for 1 statement paper. Our Joint Annual Symposium shared all these with you!

What an event! The teams of EIT Health Germany-Switzerland and EIT Health Spain are delighted that so many Partners and other industry stakeholders decided to join us for this two-day exchange on Health Data Management. Experts from academic, industrial, and political institutions came together at the Cubex One in Mannheim to share their experiences with Health Data Management and discuss measures and objectives that maximise benefits for patients.

 

This was the event: Impressions and learnings

 

 

 

 

 

 

 

We welcomed our guests on 17 November within the walls of CUBEX ONE, the newest addition to the Mannheim Medical Campus. Over coffee and pretzels, the guests had their first chance to make connections and network before taking their seats in our main hall, the “Conference now”.

 

 

It was with great joy and pride that Nandor Gaus, Managing Director at EIT Health Germany-Switzerland, and Izabel Alfany, Operations and Business Development Director at EIT Health Spain finally started the long-planned programme. The stage was now opened for our experts and we began our journey.

 

Opening the programme, Manuel Arellano (Vice President of the Spanish Patients´ Platform and member of the Board of the European Patients´ Forum) gave the first keynote and brought the patients’ perspective into focus, setting the tone for a discussion, that will keep the wellbeing of European citizens in its center. What current approaches for a European data solution are and why this step is essential for healthcare on a national and international level was then set out by Dr. Nick Schneider (Bundesministerium für Gesundheit).

 

“Patients are much more than their illness, we have to consider their personality and individuality. They are much more than data.” – Manuel Arellano

 

 

 

“We have to make sure that health data is accessible and can be transported across borders”. – Dr. Nick Schneider

“We have to provide our healthcare professionals technology, that is a value for them.” – Dr. Nick Schneider

 

 

Dr. Nick Schneider then joined the following podium discussion where his experiences with the EHDS were compared with other approaches. Namely, the Gaia-X-Project, represented by Harald Wagener (Berlin Institute of Health, Charite), and the H2O Project, which was presented and brought to the table by Dr. Angele Benard-Sankaran (H2O Project Development, VHIR). The heated and informative session was moderated by Dr. Lars Riedemann (Universitätsklinikum Heidelberg).

The afternoon block was then put together from selected presentations by Spanish and German partners, comparing database approaches and secure solutions on the one hand and sharing practical implementations and best practices on the other. Direct Q&As offered the auditorium to get into direct conversation and challenge each other.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

With a head full of new inspirations and ideas, the guests were then invited to join the evening’s social part, come together over dinner and have a prosecco.

 

Day 2: Ethical implementations and solution-focused workshops

We came back together on Friday, 18 November, to now put the exchanged information, the learnings, the challenges, and the approaches to practical solutions.

The stage was opened today by two experts on the ethical aspects of health data management. Prof. Dr. Stuart McLennan (Technische Universität München) gave insights into a paper that was published earlier this year “You Can’t Have AI Both Ways: Balancing Health Data Privacy and Access Fairly”. Cristina Gil Rey, CEO and Founder of Milbrait Asesores, discussed ethical aspects surrounding Data-Solution-based terms like the Internet of Things or the Internet of Behaviours and challenges that occur such as biases in AI.

 

The auditorium was now challenged to bring their perspectives together. In two separate workshops, the experts combined their insights from academics, industry, entrepreneurship, and politics to identify the main challenges and the most pressing questions around Health Data Management. The goal of the workshop was to determine clear priorities, suggest solutions and give recommendations for actions for European decision-makers. We are now working on collecting those outcomes, which will be published in the upcoming weeks.

 

 

Some key learnings:

Patients are more than data. They are people.

It‘s not about protecting the data. It‘s about protecting the rights of individuals.

Doctors and patients have to be at the same level and work complementary.

Involving patients in the process might allow up to an 80% reduction in development costs for new solutions.

New technology needs to be of real value to healthcare professionals. BUT: We need to consider the real needs of patients. Not only the clinician‘s perspective as they might differ.

We need to talk more about the free movement of personal data.

Data has to be accessible and transportable across borders to protect patients everywhere and provide the best care.

Overregulation is overwhelming for start-ups and hinders innovation.

The EHDS should be built around the patients. Their well-being should stand above everything else including data protection.

 

Our team thanks you for joining us in this exciting discussion and for your involvement in letting two highly innovative healthcare communities come together!