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

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.

Security creates trust
The already mentioned healthbank will be hosted in Germany – and in other countries as part of the internationalization process – on the highly secure server infrastructure in the data centers of Deutsche Telekom AG, which meets the highest requirements for security and data protection. Again, this is an aspect that pays attention to the important issue of patient trust in the application.
At the same time, this gives the patient user the opportunity to always know his data – whether in his own interest or on the basis of legal regulations – on servers in his own country, or – if he explicitly does not wish to store his data in his own country – to store it on servers, e.g., in Switzerland as a neutral location. The parallels with banking are clear – trust plays a similarly important role with patient data as with a bank account.

Real-world evidence for medical research and drug development
On basis of this trust, many patients and citizens who are convinced of this approach can finally make their patient data pool a critical mass, which is necessary for research. Completely new perspectives for medical research and the application of personalized medicine could open up if patients enrich their data sets on the platform with their genome data, for example.
As already described, various digital services that bring advantages and benefits to patients and other players in the healthcare system can build on this approach. With the right design of digital services, also high-quality real-world evidence data (RWE) can be obtained. We call this approach “create the data you need” and recommend pharmaceutical and medical technology companies to rigorously follow this path. RWE is essential in the development towards outcome-based medicine and outcome-based pricing, which will determine the future of healthcare.
Of course, all the data from fitness trackers and similar mobile health and lifestyle apps are also relevant and interesting, both for the history of a disease and for the large field of disease prevention. Therefore, also in this area it makes sense for companies and their applications to use the cooperative people-owned data storage.
It is an all-win situation for players in the health sector if such an approach with digital services based on the patient-owned data storage will bring together many more high-quality patient data, ultimately benefitting the patient’s health and – via anonymous data donation – medical research, and thus other patients.

With this approach, patient organizations and companies can act together
Such an approach can therefore certainly be fully endorsed and supported by patient organizations. Since all players in the health sector – from patients, to doctors, healthcare providers, health insurance companies, to pharmaceutical and medical technology companies – will benefit from this approach, companies and patient organizations can join forces and work together to win patients for the use of valuable digital services as described above – for the benefit of the individual patient and of the population of patients with the same disease. As a “patient-owned IT”, the cooperative approach, with the example of the healthbank, is itself a patient organization and is predestined to join forces with the various disease-specific patient organizations.
Ethical imperative to donate data for Research.

Against the background of possibilities now offered by this approach, we think that it is downright unethical if someone does not make his anonymized health data available to the research of academia and industry – from university hospitals to pharmaceutical and medical technology companies. It should become – at least morally – an obligation for every citizen in Europe to donate his or her data. Overall, this results in a solution that is in harmony with the values of solidarity cultivated in Europe – as a model for the world. The visionary goal to be achieved is a large global patient data pool under the control not of one company or one state, but under the control of all patients themselves – “from the patients in the world for all patients in the world”.

The Gordian knot has been cut
A worldwide people-owned health data platform is a bold solution for a complicated problem. Thus, with the approach described here, we use the famous analogy and see the “Gordian knot” that has so far hindered the use of health data in medical applications and research as finally cut. In this context, the cooperative, people-owned patient data storage is a real “game changer” – for the benefit of all stakeholders in healthcare and, in particular, for the benefit of the patient who always has to be the center of attention.

Author: Dr. Oliver Müller

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