Personal health data are urgently needed for medical research and medical care. They provide the foundations for personalized medicine, but in Europe they are hardly accessible for researcher and medical doctors. This project analyzes how this unfortunate situation could be changed.
In a 22-months research project the Swiss Academy of Engineering Science (SATW) will analyze the potential public value of personal health data collections and how it can materialized and leveraged. So far, there are lots of personal health data around in Switzerland, but they are hardly if at all accessible for research and medical care.
In a first step, the project will identify the value provided by personal health data. Based on the public value theory by Mark Moore a stakeholder-value matrix will be developed, which differentiates among different stakeholders and different types of public value. Thereby, expected values will be complemented with perceived risks. In order to obtain reliable results, analyses will first be carried out for scenarios that differ with respect to types of data, roles of users accessing the data, and types of usage. Only then results will be merged into a big picture.
In a second step, the project will identify and analyze different governance options, that is it will study how different forms of governance impact the stakeholder-value matrix and what this means for public and political acceptance of a personal health data platform ruled by a specific governance concept. Thereby governance for the whole public health data ecosystem will be taken into consideration. Among others this will allow us to consider both mandatory and self-determined providing of own health data to a platform.
In a third step, communication concepts will be developed that support an open and constructive political dialogue about which actions should be taken by government. Possible actions include regulatory acts, infrastructure investments, and teaching and training. The goal is to escape the current trap in the political dialogue which stems from the fact that personal health data are usually discussed in toto and lots of different aspects are thereby combined which can be handled separately.
Apart from SATW, Bern University of Applied Sciences, ETH, and Golliez Data Consulting are involved in the project. The project will build on previous experience of the BFH-Center Digital Society with public value studies in the context of digital transformation.
A workshop has been carried out with more than 30 experts from a diverse that of disciplines involved with the use of personal health data. The results of the workshop are under review by its participants and will be published in the beginning of 2018. They will be further validated in expert interviews in the coming months.
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