What is the future of health data

E-health: into the future with the handbrake on?

June 9th, 2020 - Health data are sensitive - protection against misuse is therefore a valuable asset and a legitimate requirement. But in the debate about data protection, the treasures that lie in the supply data are often ignored. Data-based applications can improve the quality of life and make medical care more efficient; In other words: save money - and ultimately save lives. Or vice versa: Failure to use such data makes medicine and research worse than they could be. Political Berlin is discussing the patient data protection law. According to this, only public research has access to anonymized patient data. That is wrong, thinks the eHealth Alliance.

In the Israeli health care system, the digital clock has a different pace. The country has been using big data for two decades; the patient data of the approximately eight million inhabitants are centrally recorded, evaluated and linked with one another. This is not a weird hobby for people with an affinity for numbers but has concrete effects on people's health: For example, the health care organization Maccabi uses an algorithm that recognizes people with an increased risk of colon cancer based on their patient data and certain values. A note is made in the personal health record via the algorithmic detection, which informs the doctors about the high-risk patients. They can then invite those affected to a preventive medical check-up in order to take preventive action at best.

Is the digital patient the healthier patient?

Math makes it possible: is the digital patient the healthier patient? Israel definitely wants to expand its pioneering position in matters of digital health, as can be read in the Bertelsmann Foundation's blog “The digital patient”. The country benefits twice: Because the digital strategy with the aim of becoming a “land of milk and honey for international research” creates the breeding ground for a start-up scene that has given Israel the reputation of a start-up nation.

The fact is: The health data of people in Germany can be a treasure that, as the example of Israel shows, can help prevent serious illnesses. The Federal Minister of Health Jens Spahn wants to find this treasure. That is why political Berlin is currently discussing its draft of the Patient Data Protection Act (PDSG). It should enable regulated access and use of the data. Basically a good idea, thinks the eHealth Alliance, in which eight associations - including the vfa (Association of Research-Based Pharmaceutical Manufacturers) - have come together. In a position paper she welcomes the possibility of voluntary data release for research purposes ("data donation") provided there, but is surprised that private research should be left out.

Industry: growth driver of the health economy

Research-based companies are the main drivers: "Around 75 percent of research projects are either carried out or financed by industry," can be read in the position paper. It is feared that Germany will lose ground in terms of innovation ability and potential, because "access to validated data is a crucial prerequisite for research and the development of innovative solutions" - also because other countries have decided on a different one Way to go. In Finland, for example, research institutes as well as research companies have had access to health data since the beginning of 2020.

Access to data can open up entirely new avenues for research. In clinical drug studies, for example, virtual control arms can be created on the basis of large amounts of data. Instead of a dummy drug (placebo) - the common procedure for making comparative statements about the effectiveness of new active ingredients - the control group of a study could be virtually simulated on the basis of existing patient data. This would have several advantages: It enables smaller studies, the patients would only receive the new and possibly better therapy, new therapies could possibly be available more quickly to the patients who need them. “This is of very specific benefit to patients,” writes Vfa boss Han Steutel in Observer Gesundheit. “And it saves time and money.” The prerequisite: data access. Such studies already exist - but so far only with data from the USA.

The digital opportunities based on anonymized patient data can only be guessed at:

  • Artificial intelligence (AI) applications offer the possibility of raising cancer early detection to a new level, especially where multidimensional data are concerned, where laboratory, imaging and diagnostic parameters can be linked. So, thanks to AI, many cases of cancer could be avoided before they develop.
  • New care concepts can arise - for example through telemedicine-supported therapies, where - by expanding the data pool - not only the therapy itself, but also risk factors for certain comorbidities can be identified and treated at an early stage.
  • Sensibly used data hold the promise of being able to improve people's health, because they enable analyzes of current therapeutic approaches and show opportunities for improvement (health services research).
  • Patient data can be used to better evaluate the current course of the disease and, if necessary, to adjust it (e.g. adjustment of the dosage). Mutations can be identified and assessed on the basis of linked genotypic, phenotypic and epidemiological data - a step not only towards early, but also towards personalized treatment.

These are just a few examples that show what opportunities the use of digital patient data can offer. From the point of view of the e-health alliance, the PDSG draft must therefore be supplemented by an independent right of private research. So that big data becomes smart data. Because "health data save lives", as the eHealth Alliance writes.