During the last 10 years, we have become digitally dependent on international corporations like Facebook or Google. The benefit of data usage is mainly with these multinational corporations. Many of us trust our physician. But can we trust Google or Facebook? Most like not, as evident from the recently uncovered Facebook-Cambridge Analytica case.
In addition, Google and Facebook are not very efficient in collecting personal data of their users. They have neither the legal right nor the capability to comprehensively aggregate. In contrast to individuals (us) who naturally have the legal right and also the opportunity for comprehensive aggregation of our own data. Only we can link our medical data with all our other personal data, outside of the healthcare system. Data portability (as “right to obtain a data copy”) will give us access to our data that Facebook and Google have collected and allow us to aggregate them under our own control. In this manner, we can regain primacy over our data. Fundamentally new concepts of governance, new legal and ethical frameworks will be required to reach that goal.
The Swiss digital healthcare ecosystem is inefficient and not yet ready for precision medicine of the future.
In our current healthcare system data can neither be easily accessed nor exchanged. As a result, patients do not receive best possible treatment and healthcare services are redundant. Rising costs are the consequence.
A law enforcing the Electronic Patient Record (EPR) was introduced in Switzerland in 2017; it aims at improving data flow in primary healthcare. However, it does not take into account use of data for research. It does also not include data that patients generate themselves with sensors and smartphones.
Precision medicine requires comprehensive aggregation of all available data. For example, genetic, clinical, and smartphone-based personal data. All of these are currently stored in data silos, and these silos are typically incompatible and inaccessible. Patients cannot easily and directly access or use their own personal data, e.g. make them available for research projects focused on therapies for their own disease.
If patients had control of their own data and with the appropriate technical basis in place, data interoperability would allow them to play a more active role in the healthcare ecosystem. Large corporations like Apple and Google are currently developing and implementing technologies to control patient data. We think that control over patient data should not be given into the hands of corporations. Healthcare data belongs under the control of the patients!