Explore the words cloud of the POLICYAID project. It provides you a very rough idea of what is the project "POLICYAID" about.
The following table provides information about the project.
|Coordinator Country||Denmark [DK]|
|Total cost||1˙972˙860 €|
|EC max contribution||1˙972˙860 € (100%)|
1. H2020-EU.1.1. (EXCELLENT SCIENCE - European Research Council (ERC))
|Duration (year-month-day)||from 2016-06-01 to 2021-05-31|
Take a look of project's partnership.
|1||KOBENHAVNS UNIVERSITET||DK (KOBENHAVN)||coordinator||1˙972˙860.00|
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|
BrÃgida 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 â€“ 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|
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|
Zainab Sheikh, Klaus Hoeyer
â€œThat is why I have trustâ€: unpacking what â€˜trustâ€™ 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|
Hvem skal bruge sundhedsdata â€“ og til hvad?
published pages: , ISSN: , DOI:
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|
Sarah Wadmann, Christina Holm-Petersen, Charlotta Levay
â€˜We donâ€™t like the rules and still we keep seeking new onesâ€™: 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|
Zainab Afshan Sheikh, Klaus Hoeyer
â€œStop Talking to People; Talk with Themâ€: 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|
Francisca Nordfalk, Claus Thorn EkstrÃ¸m
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|
Mette Hartlev & Sarah Wadmann
Sundhedsdata og kvalitetsudvikling â€“ et retligt kludetÃ¦ppe
published pages: 116-128, ISSN: 0107-699X, DOI:
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The information about "POLICYAID" are provided by the European Opendata Portal: CORDIS opendata.