Why the glass patient in Austria is fragile
ELGA promises to provide doctors, hospitals and other health service providers with exactly the individual patient data they need at the touch of a button. This saves effort, improves treatment and can sometimes save lives - at least in theory. In practice, ELGA has so far proven to be a cumbersome tool that also carries one or two serious risks.
Health data captured by cyberattacks, which bring a lot of money in Darknet. Hacked medical histories that are changed and thus pose a danger to the body and soul of the victim. The fact that such and many other horror scenarios are not completely out of the air is shown in practice: In 2013, for example, millions of data records were stolen from the Austrian Association of Pharmacists - including those of the then Federal President Heinz Fischer. Being "transparent" as a patient therefore harbors many dangers. But what use does the digital medical history of a patient generate at the touch of a button?
How patients should benefit from ELGA
In Austria, such an electronic patient file - the Electronic Health Record (ELGA) - is currently being implemented. ELGA offers authorized health service providers, such as doctors, hospitals, nursing homes and pharmacies, access to specific patient data for a certain period of time. These data include medical and nursing discharge letters from hospitals, laboratory findings, imaging diagnostic findings and medication data. The patient himself not only has access to these data, but can also determine which information can be accessed by whom and which data he does not want to pass on. Anyone can unsubscribe from ELGA and re-register. The patient benefits from ELGA in many ways:
1) Secure information at the touch of a button
Today, every patient is a carrier of their own health data. They have to organize the laboratory findings, X-ray data or discharge letters and information on medications taken themselves and have them ready - for example when visiting a doctor. This means additional effort, which is required precisely when the patient is ill. Older people, in particular, cannot always remember their intolerances or all the medicines they are taking during a visit to the doctor. ELGA ensures that health care facilities can call up all relevant patient data at the touch of a button.
2) No multiple examinations
If a patient cannot provide all the necessary information himself, there is a risk of multiple examinations. A new doctor must always start from scratch if he has no knowledge of previous findings. This is an additional burden for the patient himself. Such duplicate examinations cause costs for the health care system that could easily be avoided.
3) Protection against the wrong medicines
If a patient forgets to inform a doctor of any intolerances or does not inform him of all the medicines he is currently taking, this may result in double prescriptions or interactions between the individual active substances. In Germany, between 16,000 and 25,000 people die each year from drug interactions and side effects. This is to be prevented with the data on medication available at the push of a button.
4) ELGA opens the door to many more applications
If health data is available electronically and authorized health service providers can access this information on demand, many other applications are possible that can make life easier for patients and save unnecessary costs for the general public. One such application based on ELGA is e-medication. In this database, prescribed drugs are stored in a list for one year. This information protects against unwanted interactions and unnecessary duplication of prescriptions. E-medication is to be gradually introduced throughout Austria by September 2019 and is already on the air in some provinces. Another application that will soon be available is the electronic vaccination pass. This does not only inform the patient about his previous and future vaccinations. The application thus also provides secure data on vaccination coverage rates, for example. Future functions, such as an e-visit, are also conceivable on the basis of ELGA and are already part of everyday life in other countries. A patient can consult a physician via videoconference and thus save himself a visit to the practice as a sick person.
Many dangers lurk on the glass patients
In summary, ELGA forms the basis for all types of e-health. Nevertheless, the project has been the subject of criticism since its inception in 2006. Concerns about ELGA have come from data protectors and the Medical Association. They essentially formulate the following dangers:
1) Health data is not safe from hackers
The Vienna Medical Association criticized ELGA as a data leak and espionage tool in a broadcast. The interest group is basing its criticism on a study that uncovers dangerous weaknesses. Because ELGA relies on a decentralized federal identity management and authorization concept. Any access in a hospital or other facility with weak points in IT security could be misused to potentially view all ELGA health data of all Austrians who did not have an opt-out. In addition, users can only log in with a user name and password - further authentication is not necessary. "In contrast to online banking, where strong two-factor authentication through an additional TAN entry or a hardware token plus PIN is necessary and thus makes electronic theft impossible, the ELGA authentication procedure facilitates identity theft," the Vienna Medical Association continued in its transmission. The Federal Ministry of Labour, Social Affairs, Health and Consumer Protection, however, refers to the highest technical security standards applied by ELGA.
2) Economy gains access to patient data
"Health is the largest or second largest sector of the economy almost everywhere in the world", Apple CEO Tim Cook explained in an interview with Fortune magazine. The data stored in ELGA is therefore incredibly valuable for the economy. Politicians could well succumb to the pressure to gain access to it, and this has already happened in Austria: The data package adopted on 20 April stipulates that the personal data of citizens collected and stored by the federal government may also be accessed by companies for research purposes. This also applies to the patient data stored in ELGA. ELGA was originally created to improve the flow of information between patients and health care facilities. There was never any talk of passing the data on to third parties. The debate about this law has led to many de-registrations of ELGA and the medical association advised to withdraw from the electronic health record.
3) ELGA complicates the everyday life of doctors instead of making it easier
The medical association describes the search for the desired medical information in ELGA as difficult. It is often quicker if the patient himself requests a required finding directly from the corresponding health service provider by telephone than to find it via ELGA. "ELGA should make our daily work easier for hospital doctors so that we have more time for our patients", emphasizes Harald Mayer, Vice President of the Austrian Medical Association (ÖÄK). Instead, the previous empirical values would reveal an enormous additional expenditure of time and bureaucracy.
4) Incomplete medical histories make information worthless
Since every patient can log on and off again and can also take out findings himself, the medical history is not complete. "As soon as the patient can block individual findings, the whole thing is pointless", a physician told News magazine.
Conclusio: Why the glass patient in Austria is fragile
Being transparent as a patient brings many advantages and is the basis for advancing digitization in medicine and profiting from the many advantages. The danger of data misuse is, of course, always present and can never be ruled out. If information about health is misused, lives are also at stake. However, canceling digitalization in the healthcare sector is not an option, as the benefits outweigh the risks - at least in theory. ELGA also has many advantages for patients and the health system as a whole. However, the system reveals considerable technical weaknesses and has failed to provide patients with comprehensive and understandable information about the benefits. The decision to make ELGA data available to industry was anything but a confidence-building measure. So it remains to be seen how many Austrians actually want ELGA to turn them into transparent patients. By May 2018, 273,000 people had signed off from ELGA.
Born in Vienna. Since 2018 "Certified Service Design Thinker" he has been pursuing his passion as Innovation Manager at LEAD Innovation.