Call for Action: Data in Public Health Crises
In the framework of the annual call for funding 2021 of the Strategic Partnership between the University of Geneva and the University of Zurich, the project entitled “Governance Mechanisms for Access and Use of Data in Public Health Crises” recently released a Call for Action. This intriguing project was led by Prof. Dr. Florent Thouvenin (UZH) and Prof. Dr. Jacques de Werra (UNIGE). The Call for Action addresses the problem of effective access to and use of relevant data for decision-making in public health crisis. Particularly the COVID-19 pandemic demonstrated that medical data is not always systematically used in a meaningful way in crisis situations.
In order for authorities to make informed decisions in the event of a crisis, they must be able to quickly access relevant data stored by other authorities or private actors without bureaucratic effort. The Call for Action identifies various technical, legal and societal barriers that inhibit the access to and use of this relevant data. First, there is a general lack of standardisation regarding the actors and systems that hold the relevant data. Systems where medical data is stored often vary from practitioner to practitioner and from hospital to hospital. Due to high costs, a general standardization of such systems is not easy. Second, broad access to personal data or even a consolidation of large amounts of data in a central system is contested by fundamental data protection concerns. Anonymisation would technically allow for an unlimited use of data, but effective anonymisation of medical data has become very difficult. Furthermore, anonymisation may not always be desirable in a crisis situation because it could limit help to individuals in need. Finally, data illiteracy and lack of trust regarding data use are widely spread issues in contemporary society.
“Shareable data” versus “shared data”
The Call for Action outlines possible solutions to overcome these challenges. It is argued that a distinction must be made between “shareable data” and “shared data”. In principle, data should be stored in such a way that it can be shared (“shareable data”), but it is only effectively shared in the event of a crisis (“shared data”). This approach ensures that in the event of a crisis (and only then) authorities can quickly access the relevant data and use it as a basis for decision-making without having to store the data in a central system. For this approach to be feasible, the focus of data protection laws must be laid more on the conditions for data sharing and processing instead of on the regulation and prevention of data sharing and processing. However, laws alone are not sufficient. Society as a whole must support this sharing and processing of their data. Therefore, building trust, promoting data literacy and educating the public on measures to prevent data misuse are essential.
This project funded by the UZH-UNIGE Strategic Partnership offers promising answers to tackle future health crises more effectively and efficiently. The researchers from the University of Geneva and the University of Zurich are now actively in contact with politicians and the government regarding the results and their possible implementation. It is a commendable example of the important impact research can have on policy making and society as a whole.
See the publication of the Call for Action in the Jusletter, the biggest legal online magazine in Switzerland, here.
Read and download the whole Call for Action below.
