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Data Driven Healthcare – and Europe?

12.12.2019

The future of health is data driven. But are we ready for this to happen? This question was raised at our recent DayOne Expert Event. Answers were given by Dutch and Swiss leaders in digital health.

DayOne Experts

The tech world has evolved in the past decades with an elephant in the room: Data. Simply put, society, government and users have been neglecting the impact of this most essential building block of the digital age. Blinded by the convenience of web applications, such as search engines, e-commerce, online news and social media, no one dared to stop the party and raise their hand; and even if a few digerati did in the early days, they remained mostly unheard.

This has changed dramatically over recent years, and it could be said that the digitalization of health has played a crucial role in achieving this turning point concerning the public awareness of data issues. Health data is not any kind of data: it is quite intimate, and points to the fact that giving it away without any precautions (as we do when we use all other kinds of digital platforms) can have unforeseen consequences.

While the US, being home to the world leading tech giants, has been reluctant to strengthen privacy laws and take a closer look at the economic, political, and societal impact of amassing data by a few players, China has retained its traditional collectivist mindset in putting the government in the driver’s seat when it comes to data control and access. Europe has clearly taken another direction, basically strengthening privacy laws and making data portability compulsory, enabling individuals to regain control over the access to their data.

This is all part of the bigger picture that framed the recent DayOne Experts event “Data-driven healthcare — are we ready?” organized in close collaboration with the Embassy of the Netherlands. Then panellists made it clear that, in principle, they embraced the European approach, even though its implementation still begs the question: will it facilitate or hinder healthcare innovation and put Europe even further behind when it comes to digital health?

For all those who are rather sceptical as to whether Europe will find its way through this, the Dutch may be considered a role model in having quite a track record on implementing policies that serve both commercial drive and societal impact dating back to the very beginning of the internet in 1994 with projects like the “De Digitale Stad”. It comes then as no surprise that Ron Roozendaal, Director of Information Policy & CIO for the Dutch Ministry of Health, appeared with a statement that leaders usually seem to struggle with: “The citizen should be the CEO of their own data”.

This principle had also been at the very heart of Switzerland’s Electronic Patient Record, which was heavily pushed by the second speaker of the evening, Peter Indra (today’s Head of Healthcare, Department of Health, Canton of Basel-Stadt) back in 2007 when he was working for the Swiss health department. But what happened was, that medical doctors strongly opposed the idea of giving away their control over health data, which thereby diluted the fundamental idea of the electronic patient record.

15 years later the mindset is starting to change. The necessity to open access to health data in order to boost research and innovation is perceived as national priority. The task is led by Katrin Crameri, Director of Personalized Health Informatics at SIB, on behalf of the Swiss Personalized Health Network (SPHN). And the aim is to provide a federal solution to give researchers access to the health data stored in the five university hospitals of Switzerland. Crameri’s insights left no doubt: We are in Switzerland and the road is steep.

While Switzerland is still building on the fundamental building block of Data Driven Healthcare, it was interesting to learn from Niels Chavannes, how to actually implement solutions in the healthcare system underlining the importance of actually delivering the clinical evidence of these tools. This was also well received by Ulrich Mühlner, CEO of DocDok, who agreed with the need to clearly setting the serious solutions apart from the digital snake-oil apps that are flooding the market epidemically.

The following are my personal takeaways from this lively evening in Basel:

– If we want patients and citizens to engage by sharing their health data, trust is key. Considering the current low esteem in which the industry is held, PR strategies will not suffice to fix the gap. Neutral, open, and collaborative platforms will be needed to make future solutions happen.

– As we move towards precision medicine and personalized healthcare neither the “one-size-fits-all”-strategy nor the “the winner takes all”-approach will suffice any longer. This means a health data ecosystem is needed where different solutions can be federated and combined around patients’ needs, rather than the other way around trying to invent the one and only blockbuster killer app.

– In order to build such federated solutions, the fundamental mindset of today’s tech industry (deeply rooted in Silicon Valley) will have to change. In healthcare, it will not be the data running to the algorithms creating central platforms, but the other way around: algorithms running to the data which remains stored decentral controlled by the user. What sounds idealistic may be the next tech wave with its (typically European) foundations in distributed ledger technologies and open-source software.

To see what was presented, please check out the slides here.

A big thank you to all speakers and panellist:

Ron Roozendaal, Director of Information Policy & CIO, Dutch Ministry of Health, Welfare and Sport

Peter Indra, Head Healthcare, Department of Health, Canton of Basel-Stadt

Niels Chavannes, Founder of the National eHealth Living Lab, Leiden University Medical Centre

Katrin Crameri, Director Personalized Health Informatics at SIB

Dr. Ulrich Muehlner, Co-Founder and CEO Docdok

Maria Hahn, Co-Founder and CEO of Nutrix

Nico van Meeteren, Executive Director Health~Holland

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