"My data for medicine? Definitely, yes!"

Those who enter a hospital or receive medical treatment are increasingly asked whether their personal medical data may be used for research. Many patients have concerns: Why should I do this? Is the data protected? Who benefits from the knowledge?

These questions were discussed last Sunday at a panel event with Scientifica visitors. Present on the panel: Beatrice Beck Schimmer, Director University Medicine Zurich, UZH, Elisabeth Stark, Prorector Research UZH, Katrin Crameri, Director Data Coordination Center SPHN, Basel, Harald Gall, Dean Faculty of Economics, UZH, Catherine Jutzeler, Head Biomedical Data Science Lab, ETH Zurich, Michael Krauthammer, Professor of Medical Informatics, Institute of Quantitative Biomedicine, UZH. The event was moderated by Beat Glogger, freelance science journalist.

Why should I provide my data and how will it be managed?

The visitors in the UZH auditorium were asked to fill out an online questionnaire at the beginning of the event. Half of those present said they had donated blood before. Two-thirds had provided biological material – such as tissue samples. Katrin Crameri said that was also in line with her surveys. Between 60 and 80 percent of Swiss citizens who are asked sign a so-called general consent. By doing so, they give their consent to donate data and samples that are already available as well as those that will be collected in the future to research. "It is important to inform the patient:s well, they must be educated about how valuable the data is for research and that it will not be misused," Beatrice Beck Schimmer emphasized.

However, data are only meaningful if many of them are available in uniform quality. A guarantor for this data quality and security is the "Biomedical Informatics Platform" (BMIP) launched by the University Medical Center Zurich. "In the coming years, this platform will ensure a leap in the quality of biomedical research at the Zurich site," said Elisabeth Stark. The four university hospitals involved will be able to make their collected data, which has been anonymized in accordance with the applicable legal and ethical guidelines, available on the new platform under secure conditions for individual research projects. The prerequisite for this is uniform data management. Such projects involve high costs, Stark said. The BMIP is financed with eight million Swiss francs. The existing biobanks containing valuable patient data from tissue samples, among other things, will also be integrated into the platform.

Across Switzerland, data collections to date have not always been compatible and cannot easily be shared between hospitals and used for research projects, Katrin Crameri said. The SPHN initiative is therefore working on a nationwide digital infrastructure.

Why is health data important?

Catherine Jutzeler analyzes data from patients with spinal cord injuries. They are, for example, blood values, heart rates, pre-existing conditions, but also with drug treatment. "We work on secure platforms specifically designed for highly sensitive data," she said. Since spinal cord injuries are a rare disease, she says her research depends on obtaining a lot of data, which is the only way to better establish correlations that can ultimately benefit patients.

Michael Krauthammer also collects data from the clinic. It is data on oncologic diseases such as the type of cancer, what medications are being taken or what therapies are being used. The large amount of data that would result would be analyzed by artificial intelligence using algorithms. From this, new patterns may emerge that were not previously known. Such analyses would be carried out, for example, in the Tumor Profiler project, which analyzes tumors in unprecedented detail. This is an important step toward personalized cancer therapy, he said.

With lots of data and the help of artificial intelligence, things would become apparent that could lead to new insights in medicine, Harald Gall said. He also sees potential in data from personal fitness devices, such as pedometers or sleep trackers, which could also provide valuable information and help prevent certain diseases. "Digitization will advance medicine," he said with conviction.

Is the data protected?

Questions about data privacy are on the minds of many people. When asked what the main concerns were about data donation in medicine, the audience put insufficient data protection first. In second place, fears were expressed that one could be discriminated against because of the donated data, for example by insurance companies. In third place were concerns about possible commercialization of the data.

The experts on the podium put this into perspective. "The release of tissue samples follows a standardized process that takes into account scientific, legal and ethical aspects," Krauthammer said. "With anonymized data, no conclusions can be drawn about the donor or the donor." A secure computer infrastructure is used for data processing, which strictly regulates data access and thus makes successful hacker attacks unlikely.

The more data, the better? A podcast on the topic

University Medicine's new podcast, "Data, Diagnoses, Breakthroughs," is dedicated to the topic of data in precision medicine. In each episode, Beatrice Beck Schimmer, Director of University Medicine Zurich, and science journalist Beat Glogger talk with a guest - in the first episode with Michael Krauthammer, Professor of Biomedical Informatics at the University of Zurich.