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Health data management: Has the Gordian knot finally been cut?

Point of view by Dr. Uwe Andreas Amann & Dr. Oliver Müller

Point of view by Dr. Uwe Andreas Amann & Dr. Oliver Müller

Where are my patient data stored safely? To whom do I entrust my data? How can I, as a patient, have full transparency and control over my data? How can I benefit from my patient data – and how can perhaps other patients with the same disease benefit from it, too? These are questions that patients face and which are even more in focus after the introduction of the European General Data Protection Regulation (GDPR).

From our point of view, the solution to these questions is an approach in which not one of the "well-known data companies" holds the data – and possibly conducts misuse with them, but in which the patients themselves hold the data in the form of a cooperative. An example of this cooperative platform approach is the "healthbank" which was founded in Switzerland and which is now expanding its activities to Germany and other countries.

The cooperative approach of "patient-owned IT" as a game changer

We consider this approach to be a "game changer" and want to take a closer look at it in this and in further articles of a "point of view" series.

In this cooperative, the patient or citizen is not the "customer" of a company, but co-owner of a "patient-owned IT". As such, he stores his patient data there and decides what happens with the data. At the same time, however, he can also actively decide how the platform should develop in the future. Companies and institutions can also become partners in the cooperative, but only with a single voting right share. This restriction rules out any influence on the strategy or even a takeover of the cooperative through the purchase of many shares. Therefore, it is and remains a solution "from patients for patients".

The approach brings advantages for all players in the health sector: from patients, physicians and healthcare providers, to health insurance companies, as well as pharmaceutical and medtech companies. The platform approach has various functions yet.

The patient has full control and transparency over his data – and can make them usable

First, the approach offers patients the secure and trustworthy storage and retention of their health data with which they can exercise their right of self-determination and data sovereignty (platform function "collect and store").

In addition, the patient has the possibility to grant access to these data or to share them with other players in the healthcare system, e.g., physicians, hospitals or health insurance companies, in a simple and convenient way via the platform ("exchange" function). Thus, he or she can make the data usable – always transparent, highly secure by end-to-end encryption and under full control of the patient. In order to keep data under his own control with his own responsibility for security, the patient could also store the data on his private hard drive, of course, and then transfer the data to the doctor via USB stick, if required. However, this is not very comfortable and restricts many opportunities that arise.

A "health ecosystem" for digital services with the patient in focus

In view of these opportunities, the cooperative platform also has an enabling function. It enables companies to base their digital services on the platform and execute high-quality services on the data. The patient can decide whether he wants to activate these valuable services and use them for the benefit of his health – while at the same time always remaining in control of his data. The current approach of companies offering a digital service is often such that the patient hands his data over to the company – and then it is unclear what happens to his data.

This is not the case with the cooperative platform approach. Because the personal data never leave the cooperative server during the process. Another important aspect is the fact that the patient can conveniently use his data for various services, which is not the case when the data are stored in the "silos of the individual applications". The cooperative approach thus creates an open – and in perspective worldwide – "health ecosystem" with a basis people can trust in – and with the patient in the center.

Patients’ trust is key to high user numbers

In our view, also the companies offering such valuable digital services do have great benefit if they build their digital services in a way that uses the cooperative, people-owned platform as a basis. The low user numbers that many digital health applications struggle with are often due to a lack of trust of people in the companies behind the apps – and this is true for services by the "well-known data companies" mentioned at the beginning as well as for health apps by pharmaceutical companies that traditionally do not enjoy a surplus of trust by the people. There is a great uncertainty among people using a service as to what happens to their personal data, and how and for what the respective company uses or even abuses their data.

Against this background, connecting the digital service with the people-owned platform does create trust. We believe that this trust will significantly increase the number of users – provided the services are of value to the patients – and will make the respective applications as well as the companies offering these services more successful. We recommend that companies consider building all their new digital patient services in connection with the cooperative patient data storage – and further consider implementing a connection to the cooperative platform for all existing applications, too.

Making anonymized data available for medical research

We are convinced that this approach will lead to a disruptive push, especially with regard to the important availability and usability of patient data for medical research at academic institutions or pharmaceutical companies (platform function "share"). Up to now, in particular the lack of patients’ trust in the providing companies was the cause that prevented success of those companies’ data-storing health applications. Now there is a data storage that patients can trust, and where patients can decide for themselves whether and how their anonymized data may be used for research purposes, and thus help other patients. In addition, the data do not have to be extracted from existing solutions in special formats in order to be made available, but can be shared with research directly from where they are stored, i.e. from the cooperative and people-owned patient data storage.

Read the full article of Oliver Müller and Andreas Amann here on LinkedIn

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