More transparency and quality thanks to better health data

Prof. Marcel Zwahlen is a member of the Steering Committee of the NRP 74 and Deputy Director of the Institute for Social and Preventive Medicine at the University of Bern.

The NRP 74 aims to optimise the availability, accessibility and linkage of health data in the long term. Why do we need this goal?

We need this goal to gain a better understanding of our health care system in the future. We need more meaningful and more useful descriptions of exactly what is happening in our health care system. These analyses not only help us to raise the standard of health care research but they also help to lift the regulatory efforts in quality assurance and transparency to a higher, internationally competitive level.

If we do not improve the availability, accessibility and linkage of health care data that is already being routinely collected, it will not be possible to map patient paths comprehensively and across different levels of care. Moreover, most of the calls for better transparency and quality assurance will remain lip service.

What will it take to achieve this goal?

Ideally, we could use a uniform identification code for all persons being examined or treated in all health care sectors and in research projects. The identification code would have to be sufficiently secure and encrypted. In addition, a central compilation of the claims data from compulsory health insurance at the individual level could be created and made available to the federal government for regulatory purposes and - suitably anonymised - to researchers. As far as I know, the Swiss Federal Law on Health Insurance (KVG) already provides the necessary legal basis for this. However, the health insurance companies and service providers are reluctant to agree to such an aggregation of their data.

What about data protection?

Health data need careful data protection. However, there is also a public interest in improving the transparency and quality of health care by making good use of routinely collected data. The legal regulation needs to allow both things: that data can be used more effectively but also that adequate data protection is in place. This will presumably require modifications of laws or ordinances in order to strike the right balance between these two goals. We might also need new national institutions such as dedicated specialist centres for data preparation and data linking. These will have to operate within a code of practice and under strict supervision of federal authorities when supplying suitably anonymised data to researchers or governmental authorities.

What contribution is the NRP 74 making to better data and better use of data?

In some of the projects supported by the NRP 74, certain data linkages will be done which have not previously been done. The innovative project under the supervision of Dr. Lucy Bayer-Oglesby will anonymously link census data with records on hospital stays and mortality records. For this project, the Federal Statistical Office obtained clarifications from the Federal Office of Justice whether these anonymised data linkages are legally possible. Fortunately, this “test case” was given the go-ahead. This project will therefore ascertain whether both the legal and technical challenges can be successfully overcome. There are also aspects of other NRP 74 projects that break new ground in the use of data. This clarifies and prepares the procedural steps for future projects intending to make similar use of existing data sources.