acatech Impuls shows a need for action in the use of digital health data

07.06.2023 12:50

Medicine in Germany remains behind its potential as long as it uses data inadequately. How this can change is discussed in the impulse “Use of health data – secure and sovereign”, published on June 7th. In addition to uniform national rules, differentiated data release and ways to achieve higher data quality, the working group is encouraging a public debate: Given the obvious benefits of health data, the risks of non-use are serious.

In practices and hospitals across Germany, printers are still clattering, fax machines are beeping, and index cards are piling up.

“How often today is medical information that is already stored digitally printed out and taken to the nearest doctor? There the information must then be fed into a computer system by qualified specialists,” writes Olaf Dössel at the beginning of the acatech Impulse. He is a professor of biomedical engineering at the KIT (Karlsruhe Institute of Technology) in Karlsruhe and, together with Professor Thomas Lenarz (Director at the Hannover Medical School), heads the acatech topic network for health technology.

The paper-based data exchange not only costs time that should be better available for patients: “The advantages of using digital health data in medicine are now so obvious that it would be negligent not to use them,” says Thomas Lenarz.

• With the help of digital health data, individual therapies become more tailored, more predictive and more holistic. The healthcare system can be focused on prevention rather than symptom treatment.
• Multiple examinations or unnecessary treatments are prevented when doctors have a complete view of all of the patients' health data.
• Pandemics can be combated more effectively - the corona pandemic exposed serious weaknesses here in particular because important data was available with a delay and was sometimes inaccurate.
• Digital data exchange also brings more efficiency and therefore fewer unnecessary costs and more time for patients.

In order for data to be used effectively for the benefit of healthcare, fundamental changes must take place in the healthcare system. The working group has developed suggestions on how good quality data can be collected, shared and used. In addition, she sees a need for change in training and further education, in the promotion of innovation and in the formation of public opinion.

Away from blanket opt-in or opt-out models

The acatech Impuls proposes a differentiated model that is based on sovereign patients. They should be able to decide easily and comprehensibly who they share which data with and for which purposes. A differentiated data sharing solution should therefore be included in the future regulation on the European Health Data Space.

“In particular, we have to organize the release of data for use in research much better than is currently the case in Germany. Flat-rate opt-in or opt-out models fall short,” says Olaf Dössel.

Europe is a world leader in data protection regulations, the working group states in its impulse. The EU General Data Protection Regulation (GDPR) makes data availability compatible with the goal of better health care and data sovereignty for individuals. However, in Germany, a federally fragmented interpretation is slowing down new developments. The federal government should therefore standardize the interpretation of the GDPR within the framework of the Health Data Use Act. This is the only way we can achieve legal certainty and clear framework conditions.

Public debates about digital health data often revolve around the risks and who is allowed to use the data. The acatech working group does not hide risks – such as hacker attacks and the risk of re-identification. But she also wants to focus on the intended use. “Much more important for my decision as to which health data I release is the question of how and why my data is used. When it comes to research, research-based companies also need access,” says Thomas Lenarz. “They carry out a large part of medical research and development, they go through the complex approval processes for new drugs and innovative medical technology and they are indispensable if new medical findings are to reach people.”

The data quality must be right

The acatech working group advocates clear standards for digital documentation, which should be defined in a mandatory manner within the European Health Data Space Regulation. A good option is to introduce the FHIR standard (Fast Healthcare Interoperability Resources) across the board, which is already widespread in the USA and Israel.

“Data as PDF or completely unstructured cannot be used for medical care or research,” warns Olaf Dössel. Data quality determines its added value for healthcare.

Preventive medicine becomes possible

There are many small details that are slowing down data-supported healthcare today - but in many areas, digital data is making new medicine possible. Hermann Requardt, member of the acatech executive board and the working group on health data: “Our healthcare system currently focuses primarily on the treatment of diseases. This model lags behind both medical and demographic developments. For example, back problems are treated extensively, including surgery. It would be much better to prevent them.”

Chronic diseases such as B. Back pain, cancer, cardiovascular diseases, diseases of the sensory systems or even dementia are complex clinical pictures. They are becoming increasingly easier to diagnose, have a history going back decades and can be influenced through targeted prevention.

“Only personalized treatment promises real chances of prevention and cure – and it is possible as soon as health data can be linked. We will then reach a new level of evidence-based medicine. Our health care system as a whole must adapt to this: It must align incentives and remuneration systems much more closely with maintaining health and quality of life,” says Hermann Requardt.