Population supports research using their own health data

Four out of five people in Germany would like health data that they have collected digitally, for example with a fitness bracelet, their smartphone or other devices, to be accessible to medical research. This is a result of a current representative survey of more than 5,000 people carried out EPatient Analytics The German Society for Internal Medicine (DGIM) calls for the data protection regulations in Germany to be adapted to enable better use of data for research, and thus also progress in prevention, diagnostics and therapy.

More than 40 percent of the population in Germany now monitor their health comprehensively digitally using smartphones, smartwatches and other digital devices, shows the survey, for which EPatient Analytics independently surveyed more than 5,000 people. The sample represents all “online users” – i.e. people who are active on the Internet – and therefore around 90 percent of the German population. In particular, people measure vital signs such as sleep quality digitally, while they tend to document body weight and blood pressure in memory or using paper and pen.

“In this way, citizens independently draw a detailed overall picture of their health under real-life conditions. In doing so, they create an enormous treasure trove of data that is worth its weight in gold for research, early detection and patient-oriented monitoring of numerous diseases.”

Professor Dr. med. Ulf Müller-Ladner, Chairman of the DGIM and Professor of Internal Medicine with a focus on Rheumatology, Campus Kerckhoff, Justus Liebig University Giessen

When asked whether the test subjects would also make their health data available for research, four out of five people agreed to the transfer to a national research database. Contrary to popular opinion, the vast majority of those surveyed were in favor of using the data collected by digital health trackers for medical research, improving therapies and providing prevention services tailored to the individual. Over 80 percent of participants entrust their data to doctors and 55 percent also to their health insurance companies.

“People today track their health in a way that no medical study could manage.”

Professor Dr. med. Markus M. Lerch, 1st deputy chairman of the DGIM and medical director and chairman of the board at the LMU Klinikum Munich.

However, data protection in the restrictive German interpretation means that the data ends up with the manufacturers of smartwatches and other wearables in the USA or Asia, but does not contribute to improving medical care in this country, criticizes Lerch.

“In order to enable research in the interest and benefit of patients, data protection regulations must be adapted and the use of data for research purposes must be simplified.”

Professor Dr. med. Markus M. Lerch

Above all, the requirements for data economy and deletion periods are out of place in the scientific area.

“Data that is collected through studies financed by taxpayers’ money must be deleted after certain periods of time – that is pure waste,” says Lerch.

“It is now important to find timely, practicable solutions in the interests of citizens in the dialogue between data protection representatives and researchers, because every evidence-based increase in knowledge helps healing.”

DGIM chairwoman Müller-Ladner

You might also be interested in: “Violations of the GDPR: Consumer organizations take action against Google”

Source: German health portal


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