Work Packages
POLICYAID is organized in workpackages. You can read about them here:
This WP studies the policy frameworks governing the sourcing of health data and biomaterials.
From the perspective of health law, Mette Hartlev will focus on the EU Data Protection Reform and developments in health law determining the rights and duties of patients and research subjects as well as the interplay between the two when patient data are used for research.
From the perspective of property law, Jens Schovsbo will analyse the interplay of national and international property law (including the use of material transfer agreements) in the regulation of data sourcing from tissue samples and databases and thereby clarify the legal framework governing commercialization of bio-data.
From the perspective of STS, Klaus Hoeyer supplements the legal analysis with policy analysis of drivers for data intensification and investments in data infrastructures. Hoeyer bases the analysis on documents and interviews, and on participant observation at public hearings and meetings. He thereby complements Hartlev and Schovsbo in providing insights into political drivers affecting the legal developments that they explore.
Within this WP four subprojects complement each other to provide an understanding of national reorganization as a form of intensified data sourcing currently unfolding in Denmark.
Klaus Hoeyer studies the overall restructuring of Danish data infrastructures. The purpose is to understand the structure and interdependence of various Danish health data sources and thereby to be able to describe the primary flows of health data. Rather than understanding an infrastructure as a fixed material form through which data flows, he looks at the practices through which data become created, collected, curated, and stored while simultaneously made available for multiple purposes.
Sarah Wadmann explores data sourcing in Danish general practice and psychiatric care. By following controversies over the use of particular databases, the aim is to understand the purposes and concerns that key actors express about the collection and reuse of patient data and how these may change over time and vary among actors. ‘The purpose’ of data use is not seen as something given but explored as something that evolves over time, is constituted through negotiations between the actors involved, and enables different data flows.
Francisca Nordfalk studies experiences with and perceptions of participation in research through samples and data gathered in conjunction with everyday clinical practices. The aim is to get an understanding of how policies for data sourcing and research participation are implemented and realized in practice, by estimating how often a Danish citizen can expect to participate in research, how they might opt out, as well as exploring how the donors and the clinicians experience these policy solutions and the donors’ potential research participation.
From the perspective of medicine, Christoffer Bjerre Haase analyses how data‐intensive technologies are reconfiguring the diagnostic processes in contemporary healthcare. The analyses are based on documents and interviews in relation to philosophy of science and the principles of evidence-based medicine.
WP3 contains 2 subprojects which explore international collaborations as sites of intensified data sourcing.
Aaro Tupasela studies the emergence the emergence of new types of data sharing and use which involve IT companies and national public health authorities in the development of Artificial Intelligence (AI) for healthcare. We look at the ways in which these collaborations develop new types of demands on the way health care data (of many different types) are generated and used, as well as the ways in which the new algorithms help to co-produce new understandings of disease and illness. The study will look at what standards become enacted within these collaborations, as well as what expectations and concerns emerge among the different stakeholders. How do the collaborations help to create new knowledge-making coalitions and what type of patient emerges within this context. This follows on from his work on studying the operation of large-scale international data and sample sharing networks among biobanks. Networks such as BBMRI-ERIC and the EU funded ORPHANET are examples of such large-scale sharing platforms. The purpose was to understand the motivations of actors to participate, contribute, or not contribute in such networks, as well as to better understand the social dynamics of international sample and data sharing
Zainab Sheikh studies the collection of tissue samples (primarily blood) and data from citizens in Pakistan. These collections are part of global networks for research in rare genetic dispositions that include laboratories in Denmark and other European countries. By following the ways in which European researchers collaborate and source samples and data beyond European borders from a perspective of Pakistan, Zainab will empirically investigate what the intensification of data sourcing sets in motion in low-income countries (in terms of hopes, concerns, visions, notions of health and illness and more).
Lea Skovgaard studies public attitudes toward the use health care data for research purposes through reviewing European literature on the topic. The aim is to understand under which conditions the policies about reuse of health data for research purposes will be compatible with the values and expectations of the public in different European countries.
This WP focused on data sourcing in the hospital setting.
Anja MB Jensen explores intensified data sourcing in the clinical field of organ donation and transplantation. She will follow the everyday production and use of data when detecting donors, when coordinating transplants, when aiming to minimize the risk of infections after organ transplantation and when documenting the Scandinavian transplant activities. She will conduct interviews with doctors, nurses, data technicians and patients involved and thereby follow the data journey while eliciting the different views of what counts as relevant data, legitimate purposes, and the hopes, concerns, and political and practical implications along the way.
This WP focuses on a new kind of research usage of cadavers donated to science
Francisca Nordfalk studies the extraction of data for research purposes from cadavers donated to science in Denmark. With the establishment of a cadaveric biobank, donated bodies can now, in addition to being used for existing research and educational purposes, deliver physical measures, images and tissue samples which cannot be extracted from living donors. This information can be related to register data and health records. She will conduct participant observation at dissection labs to observe how data is collected and will also conduct interviews with scientists, medical students and donors to explore different views on what counts as legitimate usage, relevant data, hopes and concerns.
The ambition of WP6 is draw on the empirical work in the other WPs to arrive at new understandings of the type of politics exerted through data practices and its implications for healthcare and what it means to be a patient. Moreover, in this WP the group as a whole will seek to characterize contemporary policy challenges stemming from attempts at making patient data and bodies productive in multiple ways.
Article: A Data-Political Spectacle: How COVID-19 Became A Source of Societal Division in Denmark