Opendata, web and dolomites


Policy, practice and patient experience in the age of intensified data sourcing

Total Cost €


EC-Contrib. €






 POLICYAID project word cloud

Explore the words cloud of the POLICYAID project. It provides you a very rough idea of what is the project "POLICYAID" about.

medical    procurement    inter    uses    routines    emerges    purposes    big    levels    compare    financed    participant    understandings    thereby    multiple    financial    tissue    instead    quality    understand    analyze    police    rights    assurance    black    matters    infrastructure    illness    explore    forms    health    relate    denmark    describe    services    frameworks    observation    suggest    duties    assuming    public    anthropological    implications    surveillance    stakeholders    policymaking    sociological    begun    simply    attempts    combining    experiences    sourcing    policyaid    unprecedented    background    policy    describing    realm    box    gains    register    scholarship    regulatory    healthcare    biomedical    investigates    intensified    age    fuse    data    interviews    disciplinary    collecting    diverse    patients    patient    arrives    everyday    simultaneously    drivers    clinical    interact    practices    remuneration    attract    citizen    agendas    guiding    people    samples    pi    ambitiously    hopes    capital    document   

Project "POLICYAID" data sheet

The following table provides information about the project.


Organization address
address: NORREGADE 10
postcode: 1165

contact info
title: n.a.
name: n.a.
surname: n.a.
function: n.a.
email: n.a.
telephone: n.a.
fax: n.a.

 Coordinator Country Denmark [DK]
 Project website
 Total cost 1˙972˙860 €
 EC max contribution 1˙972˙860 € (100%)
 Programme 1. H2020-EU.1.1. (EXCELLENT SCIENCE - European Research Council (ERC))
 Code Call ERC-2015-CoG
 Funding Scheme ERC-COG
 Starting year 2016
 Duration (year-month-day) from 2016-06-01   to  2021-05-31


Take a look of project's partnership.

# participants  country  role  EC contrib. [€] 
1    KOBENHAVNS UNIVERSITET DK (KOBENHAVN) coordinator 1˙972˙860.00


 Project objective

The European healthcare services have begun collecting tissue samples and healthcare data from patients on an unprecedented scale. With POLICYAID we suggest the term 'intensified data sourcing' to describe these attempts at getting more data, on more people, of better quality while simultaneously making the data available for multiple uses. Data are used for research, for financial remuneration purposes, for quality assurance, to attract capital and even for police work. POLICYAID investigates how the diverse agendas interact in the making of a new infrastructure for healthcare. POLICYAID ambitiously aims to understand the drivers for and implications of intensified data sourcing in the biomedical realm across three levels: 1) policymaking, 2) everyday clinical practices, and 3) citizen experiences of health, illness, rights and duties. To achieve this aim we compare four different forms of intensified data sourcing, and analyze the regulatory frameworks guiding the data procurement and use in Denmark, the EU and beyond.

Based on PI’s strong inter-disciplinary background and experience, we fuse legal, sociological, anthropological and public health scholarship and develop new methodologies for policy analysis by combining document analysis, interviews, participant observation and register-based methodologies. Instead of simply assuming that data sourcing can be reduced to matters of surveillance, 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 stakeholders' hopes and concerns, and; who gains which rights to the data. We can thereby explore how intensified data sourcing affects clinical routines and patient experience, as well as understand how Big Data for medical research emerges. POLICYAID thereby arrives at novel understandings of both policy making and what it means to be patient in the age of intensified data sourcing.


year authors and title journal last update
List of publications.
2017 Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo, Vojin Rakic
Ethical sharing of health data in online platforms – which values should be considered?
published pages: , ISSN: 2195-7819, DOI: 10.1186/s40504-017-0060-z
Life Sciences, Society and Policy 13/1 2019-06-18
2016 Klaus Hoeyer
Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation
published pages: 351-371, ISSN: 1463-6778, DOI: 10.1080/14636778.2016.1245134
New Genetics and Society 35/4 2019-06-18
2017 Zainab Sheikh, Klaus Hoeyer
“That is why I have trust”: unpacking what ‘trust’ means to participants in international genetic research in Pakistan and Denmark
published pages: , ISSN: 1386-7423, DOI: 10.1007/s11019-017-9795-9
Medicine, Health Care and Philosophy 2019-06-18
2019 Klaus Hoeyer
Hvem skal bruge sundhedsdata – og til hvad?
published pages: , ISSN: , DOI:
2017 Francisca Nordfalk, Klaus Hoeyer
The rise and fall of an opt-out system
published pages: 140349481774518, ISSN: 1403-4948, DOI: 10.1177/1403494817745189
Scandinavian Journal of Public Health 1-5 2019-02-28
2018 Sarah Wadmann, Christina Holm-Petersen, Charlotta Levay
‘We don’t like the rules and still we keep seeking new ones’: The vicious circle of quality control in professional organizations
published pages: , ISSN: 2051-8803, DOI: 10.1093/jpo/joy017
Journal of Professions and Organization 2019-02-28
2018 Zainab Afshan Sheikh, Klaus Hoeyer
“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark
published pages: 3-14, ISSN: 1556-2646, DOI: 10.1177/1556264618780810
Journal of Empirical Research on Human Research Ethics 14/1 2019-02-28
2019 Francisca Nordfalk, Claus Thorn Ekstrøm
Newborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation
published pages: 203-210, ISSN: 1018-4813, DOI: 10.1038/s41431-018-0276-2
European Journal of Human Genetics 27/2 2019-02-28
2018 Mette Hartlev & Sarah Wadmann
Sundhedsdata og kvalitetsudvikling – et retligt kludetæppe
published pages: 116-128, ISSN: 0107-699X, DOI:
Juristen 4 2019-02-28

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