My Avatar and Me – the digitization of healthcare records

Interview with Prof. Nikolaus Forgó, Institut for Legal Informatics, Leibniz University Hannover

10/04/2016

So far, avatars could only be found in computer games. But if researchers of the EU-wide www.myhealthavatar.eu project have their way, this could soon change. Their goal is for everyone to “feed“ an avatar with their health history in the future to prevent data loss when visiting different physicians for example. MEDICA.de spoke with Professor Nikolaus Forgó, who accompanies the project in Germany.

Image: Nikolaus Forgó; Copyright: Nikolaus Forgó

Nikolaus Forgó; © Nikolaus Forgó

Professor Forgó, until now, we only know avatars from computer games. The goal of the MyHealthAvatar project that you co-manage is for all of us to receive an avatar intended to accompany us throughout our lives. How can we imagine this?

Nikolaus Forgó: At the moment, we are talking about a prototype here. First, we want to find out whether it is, in principle, technically, organizationally, legally and ethically feasible to create this type of avatar. We want to get away from storing a patient’s health history in folders, various medical practices and our –sometimes regrettably- forgetful brain. There needs to be a site that displays our personal health record and can be accessed via the internet and that’s controlled by the individual patient. Our goal is to offer patients and physicians a better way to retrace patient or disease records, respectively. Obviously, this poses significant technical and ultimately also legal challenges for us. After all, patient autonomy and data security need to be ensured throughout all of this.

The collected data volumes are intended to be stored in the cloud. Within the scope of this project, your Institute manages the data protection aspects. What do you need to pay special attention to?

Forgó: For many years, the basic principle of data privacy laws has been: everything which is not explicitly allowed is forbidden. That’s why you need to pay special attention to having corresponding permissions. This might be an informed consent from the patient or a corresponding legal basis – which is so far, however, not available to this extent. It is also important to comprehensively comply with data protection legislation.

Image: Graphic of a head within a computer network - many lines and bright colors;Copyright: panthermedia.net/Andrew Ostrovsky

The project has the goal that wie keep and collect our digital health data for a lifetime; © panthermedia.net/Andrew Ostrovsky

Is data actually secure in the cloud?

Forgó: At this point, the project is a feasibility study. Within its scope, storage in the cloud was chosen as a potential solution. However, I would generally say that the cloud can definitely be secure. After all, you could ultimately also have problems with data that is stored on local computers in medical practices. Just think of the data troves in garbage dumps. So the issue is more about what partner manages the cloud, where the servers are located and what security measures are being taken.

What advantages does this project offer compared to other databases with patient information?

Forgó: This is an EU-wide project, funded by the European Commission that was selected during a competition and that also always considers cross-border cases, whose relevance are increasing. The clear advantages for patients are in being able to control their own data better than before and to always have access to it. The advantage for the health care system is that you are able to prescribe more suitable therapies to better-informed and educated patients. New knowledge benefits science. It is interesting from a legal point of view because these types of projects cross a country’s own national borders. It would be a positive development if, unlike previously was the case, after many years of European efforts to harmonize data protection, where there are still many existing differences, we could find a common denominator. After all, the many differences are actually not necessary. Quite the contrary, we could learn a lot from each other.

When do you think could the vision of this type of avatar become a reality?

Forgó: That’s a difficult question to answer. I hope that improved prototypes can already be implemented within a few short years.

Photo: Simone Ernst; Copyright: B. Frommann

© B. Frommann

The interview was conducted by Simone Ernst and translated by Elena O'Meara.
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Image: Different medical symbols are seen like on a screen. A hand wearing a white glove taps on a symbol; Copyright: panthermedia.net/everythingposs

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