About POLICYAID
Policy, practice and patient experience in the age of intensified data sourcing (POLICYAID) is a large research project funded by the European Research Council initiated June 1st, 2016 and is expected to be completed on May 31st, 2021. The project is headed by Professor Klaus Høyer.
The European healthcare services have begun collecting tissue samples and healthcare data from patients on an unprecedented scale. In POLICYAID we employ the term 'intensified data sourcing' to describe contemporary attempts to get more data, of better quality, on more people, while simultaneously making the data available for multiple uses. Data are used for research, for financial remuneration purposes, for quality assurance, for attracting capital and even for police work. POLICYAID investigates how the diverse agendas interact in the making of a new infrastructure for healthcare.
Our aim is to understand the drivers for and implications of intensified data sourcing in the biomedical realm across three levels: policymaking, everyday clinical practices, and citizen experiences of health, illness, rights and duties. To achieve this aim we compare four different forms of intensified data sourcing, and analyse the regulatory frameworks guiding the data procurement and use in Denmark, the EU and beyond.
We fuse anthropological, sociological, legal, and public health scholarship and develop new methodologies for policy analysis by combining document analysis, interviews, participant observation and register-based methodologies. Instead of assuming what data sourcing is about (e.g., surveillance, control or research benefits), we open up the black box of data sourcing by describing how data are selected; financed; what they are used for; how data practices relate to the involved people's hopes and concerns; and who gains which rights to the data. In this way we explore how intensified data sourcing affects clinical routines and patient experience, and understand the preconditions for Big Data research in healthcare.
POLICYAID is hosted by the Centre for Medical Science and Technology Studies (MeST), Department of Public Health, University of Copenhagen. Department of Public Health is a strong interdisciplinary research environment using data intensive methodologies, and MeST is a social science research centre nested within the department aimed at delivering critical perspectives on medical and population health research and practice.
The project benefits from collaboration with a national and an international reference group. A couple of times a year members of the reference group visit the project, and in conjunctions with these visits the international guest gives a public talk. If you wish to be informed about upcoming talks, they are announced through MeST, please see MeST Facebook page.