CSH leads “Initiative for a National Medical Data Agency”

Joint Austrian Initiative

A group of high-ranking scientists and experts from the Austrian healthcare sector, assembled by CSH’s Stefan Thurner and Peter Klimek, advocates for an independent national medical data agency. A democratic and civil-society control needs to be ensured, and data should exclusively be used for the benefit of society.

According to the “Initiative zur Schaffung einer unabhängigen nationalen Medizindatenstelle,” digital vulnerabilities have become apparent in the wake of the Corona pandemic. Data quality, data flows, completeness, fast access, availability, and usability of data are not guaranteed, “data silos” are a central problem, according to the experts. The lack of combined data means  that a number of key medical questions cannot be answered in Austria. The scientists also see problems in the much too slow and non-transparent flow of many digital processes, the lack of data quality, or the different cyber- and crypto-standards for securing personal medical data at the various agencies.

One central problem is that data are collected in many different places, such as social insurances, ministries, Statistik Austria, provinces, hospitals, etc., but not brought together. Data also exist in varying degrees of quality and completeness. For the institutions, neither incentives to share or keep data together nor human resources for their optimal pooled use exist.

“Data protection” concerns would often be cited as an excuse, but “the quite rigid European General Data Protection Regulation would in many cases allow much more possibilities for meaningful and secure data use, as numerous European examples show,” according to the paper. “The absolute loss of control in pandemic management last fall clearly demonstrated that we need to re-evaluate the balance between data protection and a meaningful data use for the common good,” adds Peter Klimek.

Call for a National Medical Data Agency

In order to implement a harmonization of data flows in a transparent, secure, and timely manner, a new independent national medical data agency is proposed. Because national health data are of central and overriding relevance, none of the currently existing institutions should have sole control over them, the initiative says. Instead, it should be broadly anchored and controlled democratically by civil society.

“It must be an independent, non-interest-led body, governed by a broad, democratically legitimized board that ensures data use exclusively for the benefit of the population,” says CSH President Stefan Thurner. “This board decides on the data use of all those who need medical data in Austria, from insurance companies to research.” Who works with the data and when, and for what purpose, must be precisely documented, he said. It is especially important that “the data is stored, processed and forwarded under high-security conditions, with systems that minimize misuse, data leaks and cyberattacks.” A comprehensive data protection must be guaranteed.

Hospitals, physicians, pharmacies, care facilities, vaccination centers, etc. should regularly submit their data directly to this agency via legally defined and secure interfaces.

Providing a Better Health Management

Such an agency would also be of use for future health problems, such as the “epidemic” of chronic diseases such as cardiovascular diseases, metabolic disorders, obesity, etc., which will affect Austria in the coming decades. “Data- and evidence-based strategies must be pursued to enable a more cost-effective and resilient healthcare system,” says the initiative.

The paper is signed by experts from a wide range of Austrian (health) institutions, including several Austrian universities, Gesundheit Österreich GmbH, the Patients’ Ombudsman’s Office, the Bioethics Commission, the Vienna Science, Research and Technology Fund (WWTF), the Research Center for Molecular Medicine (CeMM) of the Austrian Academy of Sciences (ÖAW), the Institute for Advanced Studies (IHS) or the Austrian Institute of Technology (AIT), among others.