Can data heal? The dangers of electronic patient records.
By 2025, 80 percent of people with statutory health insurance should have an electronic patient record (ePA for short).
At the same time, health data - for example from doctors' surgeries and health insurance
companies - is to be made widely available for research purposes.
These are concrete goals of a digitalization
strategy for health and care presented by the Federal Minister of
Health, Prof. Karl Lauterbach.
Two specific legislative proposals follow this idea: the Digital Act and the Health Data
Utilization Act, which aims to make health data accessible for research.
Among other things, the Digital Act stipulates that the health insurance funds must set
up an electronic patient file for every person with statutory health insurance.
This can only be prevented by means of an objection by the insured person, the so-called opt-out.
Medical findings, medication lists, but also, for example, the digital vaccination
record and the digital maternity record are to be stored in this file.
This should save time, avoid duplicate examinations and simplify processes in the already overburdened healthcare sector.
At the same time, so-called telemedicine is to be expanded using artificial intelligence,
supposedly to counter the shortage of specialists and poor medical healthcare.
I have been working as a midwife in the healthcare sector for several years
and I must honestly say that I am critical of this draft law. 1.)
Every person is individual and can NEVER be portrayed as average.
Neither the ePA nor other AI or telemedicine can replace a personal medical history and assessment by a thinking, feeling and seeing trained person.
Taking a medical history is core business in every health profession and serves to build
relationships, which is important for support and treatment in the event of illness
or, in my case, pregnancy - by increasingly replacing these conversations and examinations
with technology, by looking at apps and computer-generated diagnoses and recommendations, the
art and craft of the health professions is being devalued and unlearned, and the
gut feeling and health responsibility of the patient is being undermined. 2.)
The potential for misuse with comprehensive health data collection is extreme.
Vaccinations, certain check-ups and general health status can thus be recorded and
monitored much more easily - and also lead to social stigmatization and exclusion.
We can see how this works in the countries where we are lagging behind
in digitalization, as Mr Lauterbach likes to complain:
China with its social points system, Israel with the green passport, which denied unvaccinated
people access to many public facilities during the Covid era, etc.
Users are told that they have full control over their
health data and can decide for themselves who has access or not.
However, the data is stored on central servers and clouds of a few large providers. Once it's on the net, it stays on the net.
Here are just a few examples of recent health data leaks: 2014 - 2017:
over 130 million electronic patient records hacked in the USA
2018: 3 million electronic patient records hacked in Norway
2019: Thousands of HIV patients' private data published in Singapore 2020:
Thousands of psychotherapy patients in Finland blackmailed with their data 2021: Hacker attack on Planegg urology clinic;
Data leaks during corona tests; Data from 500,000 patients in the network in France;
Hacker attack on data systems of the Irish healthcare system
Politicians and industry associations are also very interested in this data.
Here is a quote from the Ärztenachrichtendienst from July 2021: It comes as no surprise that a centralized
collection of health data, such as the electronic patient record (EPR), should arouse desire.
On Tuesday, several industry associations jointly called for easier access to the data (...)
Sarah: Now the EU Commission
wants to create a European health data space.
Their aim is to enable international industry, research and public institutions to use
the potential of the data to make better decisions during a pandemic, for example. 3.)
Last but not least, it must be remembered that the telematics infrastructure is always dependent on
the internet and technology, which is not only critical from a health perspective.
For example, think of the radiation exposure from smart devices such as I-Watches, trackers, smartphones, etc. that are needed for the infrastructure.
No, even in the event of technical faults, hacker attacks, blackouts, incorrect
programming or bias, this system can lead to massive treatment errors or,
in the worst case, to serious damage to health and death.
Due to a hacker attack on Düsseldorf University Hospital, for example, a patient could not be treated in time and died as a result.
Therefore, dear viewers, my plea: This system may only be introduced under the following conditions:
It must be voluntary!
No replacing good treatment and medical history with apps and AI! No exploitation of data by politics or industry!
As long as the system does not offer this, I strongly advise you to object in good
time before the file is automatically created! A c h t u n g !
Until the end of 2023, anyone can send a
simple letter to their health insurance provider objecting to the creation of an electronic health record.
A sample letter is attached below.
We need a healing-oriented, humane, empathetic healthcare system; not an industrially oriented data octopus system that enriches itself from our illness and obviously only gives second priority to health.