Headline: HEALTH-X dataLOFT – Sovereignty for patients
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HEALTH-X dataLOFT – many words and even more letters. But what do they stand for? What exactly is HEALTH-X data LOFT? We from the polyBlog editorial team met online for an interview with our colleague and project contact for HEALTH-X dataLOFT, Christian Buggedei, to pester him with our questions.

Christian, HEALTH-X dataLOFT, what exactly is this project?

I can explain it best with an example. Imagine the following initial scenario: The patient Anna Loft had several months of rehab after a knee operation. The medication has been changed again and again since then. In the meantime, Anna does endurance sports and meticulously watches her diet...

Okay, but that's nothing special so far. Knee operations and subsequent rehab are standard nowadays.

Wait, the highlight is yet to come. Anna can access all her medical data from one place and in a way she herself determines, starting with the documents on the knee surgery and the data from the subsequent rehab, right up to information on her medication and data from the fitness and nutrition apps she uses. All important data in one place and under Anna's complete control – that is HEALTH-X dataLOFT. If she wants, Anna can also share this data – in full or in part – with the doctor treating her. The doctor is supported by self-learning systems that suggest an optimised medication plan etc. based on Anna's data. Special apps – such as a digital rehab app – are used by Anna on a daily basis to optimise her training programme.

All well and good, but what is so much different about this example than the way things are now?

A lot. If you have a knee operation today, the data about it is on some hospital server. Information about the operation is forwarded – usually incomplete and in the form of doctor's hand written text, discharge letters etc. – to the doctor in rehab who is treating you afterwards. Health data that you collect yourself via corresponding apps usually ends up with data monopolists in the USA and European digital health apps have no access to it. This means that all data is stored somewhere and both the patients and the doctors who treat them have only limited or no access to it. HEALTH-X dataLOFT provides the infrastructure in the form of a health data space to store all this data securely and under control of the patient.

So the advantage for patients is that they can access and control all their health data?

That's right, and that is an enormous step forward compared to the current situation. Currently, citizens are only beneficiaries. With HEALTH-X dataLOFT, they become active partners and can act in a much more self-determined way.

What is our task in the project?

We are developing the Data Wallet – the interface for citizens. For the development, we can draw on our own experienced professionals and our expertise in data protection.

What is "data–based real world evidence research" all about exactly?

With HEALTH-X dataLOFT, this becomes a usable reality, for the following reasons: We bring together data from the 1st and 2nd health market. The 1st health market is, for example, data from doctors and hospitals, the 2nd health market is data collected by fitness trackers, health apps, etc. We can use this data – provided of course that patients give their consent (think data donation) – to bring together health data and evaluate it for research purposes. This will enable scientists to gain completely new insights, since all the necessary data is available.

The project sounds like an enormous effort. Can it even work in Germany?

In Germany currently there are already several federal digitisation projects in the health market that we are including in the HEALTH-X dataLOFT project, such as the MII (Medical Informatics Initiative) and the ePA (electronic patient file). So the knowledge of the importance of such a solution, as well as the will to implement it, are definitely there. We are also working with many strong partners on the implementation of HEALTH-X dataLOFT – all under the aegis of Berlin Charité – or example, companies such as Siemens, Fraunhofer, several universities, and others.

In the health data space, there are countless, very personal, data. What about data protection and security?

Data protection and security are of course the top priorities for the project. The basis for HEALTH-X dataLOFT are GAIA-X standards, which means the requirements of the GDPR apply because GAIA-X is a European project.

Editor's note: More information about GAIA-X can be found on our polyBlog: https://polypoly.coop/de-de/blog/kennen-sie-gaia-x

When did the project start?

In November this year, 2021. We are very much looking forward to working with the project partners already, and of course, also to the funding from the federal government that we won in the GAIA-X funding competition.

Editor's note: Here is the official press release from the Federal Network Agency on the winners of the funding competition: https://www.bundesnetzagentur.de/SharedDocs/Pressemitteilungen/DE/2021/20210629_GAIAX_Gewinner.html?nn=265778

Thank you for taking the time to talk to us, Christian.