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

Project Information

POLICYAID

Grant agreement ID: 682110

DOI

10.3030/682110

Project closed

EC signature date 27 May 2016

Start date 1 June 2016

End date 30 November 2021

Funded under

• EXCELLENT SCIENCE - European Research Council (ERC)

Total cost

€ 1 972 860,00

EU contribution

€ 1 972 860,00

Coordinated by

KOBENHAVNS UNIVERSITET
Denmark

CORDIS provides links to public deliverables and publications of HORIZON projects.

Links to deliverables and publications from FP7 projects, as well as links to some specific result types such as dataset and software, are dynamically retrieved from OpenAIRE .

Publications

Peer reviewed articles (25)

Weak Data: The Social Biography of a Measurement Instrument and How It Failed to Ensure Accountability in Home Care

Author(s): Klaus Hoeyer, Malene Bødker
Published in: Medical Anthropology Quarterly, 2020, ISSN 0745-5194
Publisher: Wiley-Blackwell
DOI: 10.1111/maq.12602

‘You should see a doctor’, said the robot: Reflections on a digital diagnostic device in a pandemic age

Author(s): Haase, C. B., Bearman, M., Brodersen, J., Hoeyer, K. & Risor, T
Published in: Scandinavian Journal of Public Health, Issue Volume 49 Issue 1, 2020, Page(s) 33-36, ISSN 1403-4948
Publisher: SAGE Publications
DOI: 10.1177/1403494820980268

Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan

Author(s): Zainab Afshan Sheikh, Anja M.B. Jensen
Published in: Social Science & Medicine, Issue 228, 2019, Page(s) 103-110, ISSN 0277-9536
Publisher: Pergamon Press Ltd.
DOI: 10.1016/j.socscimed.2019.03.024

Data promiscuity: how the public–private distinction shaped digital data infrastructures and notions of privacy

Author(s): Klaus Hoeyer
Published in: Humanities and Social Sciences Communications, Issue 7/1, 2020, Page(s) 1-8, ISSN 2662-9992
Publisher: Palgrave Communications
DOI: 10.1057/s41599-020-00535-6

Datafication and accountability in public health: Introduction to a special issue

Author(s): Klaus Hoeyer, Susanne Bauer, Martyn Pickersgill
Published in: Social Studies of Science, Issue 49/4, 2019, Page(s) 459-475, ISSN 0306-3127
Publisher: SAGE Publications
DOI: 10.1177/0306312719860202

Challenges for the Sustainability of University-Run Biobanks

Author(s): Kongsholm NCH, Christensen ST, Hermann JR, Larsen LA, Minssen T, Pedersen LB, Rajam N, Tommerup N, Tupasela A, Schovsbo J
Published in: Biopreservation and Biobanking., Issue Volume: 16 Issue 4, 2018, ISSN 1947-5535
Publisher: Mary Ann Liebert Inc.
DOI: 10.1089/bio.2018.0054

Reply to DM Hougaard et al.

Author(s): Francisca Nordfalk, Claus Thorn Ekstrøm
Published in: European Journal of Human Genetics, Issue 27/11, 2019, Page(s) 1628-1629, ISSN 1018-4813
Publisher: Natue Publishing Group
DOI: 10.1038/s41431-019-0436-z

Data as promise: Reconfiguring Danish public health through personalized medicine

Author(s): Klaus Hoeyer
Published in: Social Studies of Science, Issue 49/4, 2019, Page(s) 531-555, ISSN 0306-3127
Publisher: SAGE Publications
DOI: 10.1177/0306312719858697

Making it Happen. Data Practices and the Power of Diplomacy among Danish Organ Transplant Coordinators

Author(s): Anja Marie Bornø Jensen
Published in: Biocities, 2022, ISSN 1745-8552
Publisher: Palgrave Macmillan Ltd.
DOI: 10.1057/s41292-021-00267-z

Plastic diagnostics: The remaking of disease and evidence in personalized medicine

Author(s): Sara Green, Annamaria Carusi, Klaus Hoeyer
Published in: Social Science & Medicine, 2019, Page(s) 112318, ISSN 0277-9536
Publisher: Pergamon Press Ltd.
DOI: 10.1016/j.socscimed.2019.05.023

Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation

Author(s): Klaus Hoeyer
Published in: New Genetics and Society, Issue 35/4, 2016, Page(s) 351-371, ISSN 1463-6778
Publisher: Carfax Publishing Ltd.
DOI: 10.1080/14636778.2016.1245134

Ethical sharing of health data in online platforms – which values should be considered?

Author(s): Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo, Vojin Rakic
Published in: Life Sciences, Society and Policy, Issue 13/1, 2017, ISSN 2195-7819
Publisher: Springer Open
DOI: 10.1186/s40504-017-0060-z

“That is why I have trust”: unpacking what ‘trust’ means to participants in international genetic research in Pakistan and Denmark

Author(s): Zainab Sheikh, Klaus Hoeyer
Published in: Medicine, Health Care and Philosophy, 2017, ISSN 1386-7423
Publisher: Kluwer Academic Publishers
DOI: 10.1007/s11019-017-9795-9

Dangers of the digital fit: Rethinking seamlessness and social sustainability in data-intensive healthcare

Author(s): Sarah Wadmann, Klaus Hoeyer
Published in: Big Data & Society, Issue 5/1, 2018, Page(s) 205395171775296, ISSN 2053-9517
Publisher: SAGE
DOI: 10.1177/2053951717752964

“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

Author(s): Zainab Afshan Sheikh, Klaus Hoeyer
Published in: Journal of Empirical Research on Human Research Ethics, Issue 14/1, 2018, Page(s) 3-14, ISSN 1556-2646
Publisher: University of California Press
DOI: 10.1177/1556264618780810

‘We don’t like the rules and still we keep seeking new ones’: The vicious circle of quality control in professional organizations

Author(s): Sarah Wadmann, Christina Holm-Petersen, Charlotta Levay
Published in: Journal of Professions and Organization, 2018, ISSN 2051-8803
Publisher: Oxford University Press
DOI: 10.1093/jpo/joy017

Newborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation

Author(s): Francisca Nordfalk, Claus Thorn Ekstrøm
Published in: European Journal of Human Genetics, Issue 27/2, 2019, Page(s) 203-210, ISSN 1018-4813
Publisher: Natue Publishing Group
DOI: 10.1038/s41431-018-0276-2

The rise and fall of an opt-out system

Author(s): Francisca Nordfalk, Klaus Hoeyer
Published in: Scandinavian Journal of Public Health, Issue 1-5, 2017, Page(s) 140349481774518, ISSN 1403-4948
Publisher: SAGE Publications
DOI: 10.1177/1403494817745189

Sundhedsdata og kvalitetsudvikling – et retligt kludetæppe

Author(s): Mette Hartlev & Sarah Wadmann
Published in: Juristen, Issue 4, 2018, Page(s) 116-128, ISSN 0107-699X
Publisher: Djoef Forlag

More than sample providers: how genetic researchers in Pakistan mobilized a prenatal diagnostic service for thalassemia

Author(s): Sheikh, Z.A., Wahlberg, A
Published in: BioSocieties, 2021, ISSN 1745-8552
Publisher: Palgrave Macmillan Ltd.
DOI: 10.1057/s41292-021-00264-2

The Nordic data imaginary

Author(s): Aaro Tupasela, Karoliina Snell, Heta Tarkkala
Published in: Big Data & Society, Issue 7/1, 2020, Page(s) 205395172090710, ISSN 2053-9517
Publisher: Big Data & Society
DOI: 10.1177/2053951720907107

‘Meaningless work’: How the datafication of health reconfigures knowledge about work and erodes professional judgement

Author(s): Klaus Hoeyer, Sarah Wadmann
Published in: Economy and Society, Issue 49/3, 2020, Page(s) 433-454, ISSN 0308-5147
Publisher: Routledge
DOI: 10.1080/03085147.2020.1733842

Desire, duty and medical gifting: how it became possible to long for a useful death

Author(s): Klaus Hoeyer, Maria Olejaz
Published in: Mortality, Issue 25/4, 2020, Page(s) 418-432, ISSN 1357-6275
Publisher: Brunner - Routledge (US)
DOI: 10.1080/13576275.2019.1684252

The Mutual Enablement of Research Data and Care: How Newborn Babies Become a National Research Population

Author(s): Franciska Nordfalk
Published in: Science & Technology Studies, 2022, ISSN 2243-4690
Publisher: The Finnish Society for Science and Technology Studies
DOI: 10.23987/sts.98655

A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good

Author(s): Lea L. Skovgaard, Sarah Wadmann, Klaus Hoeyer
Published in: Health Policy, Issue 123/6, 2019, Page(s) 564-571, ISSN 0168-8510
Publisher: Elsevier BV
DOI: 10.1016/j.healthpol.2019.03.012

Book chapters (6)

Sundhedsdata sætter patienters privatliv under pres

Author(s): Mette Hartlev
Published in: Eksponeret: Grænser for privatliv i en digital tid, 2018, Page(s) 13-28, ISBN 9788712056737
Publisher: Gad

Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country

Author(s): Hoeyer, K L Floridi & B Mittelstadt (eds.)
Published in: The Ethics of Biomedical Big Data, 2016, Page(s) Pp. 73-94, ISBN 9783-319335254
Publisher: Springer

Data-Sharing Politics and the Logics of Competition in Biobanking

Author(s): Aaro Tupasela
Published in: Bioeconomies, 2017, Page(s) 187-206, ISBN 978-3-319-55650-5
Publisher: Springer International Publishing
DOI: 10.1007/978-3-319-55651-2_8

Lost and Found: Relocating the Individual in the Age of Intensified Data Sourcing in European Healthcare in Personalized medicine, individual choice and the common good

Author(s): Hoeyer, K Editors: B Beers, S Sterckx and D Dickenson
Published in: Personalized medicine, individual choice and the common good, 2018, Page(s) 144-166, ISBN 9781-108590600
Publisher: Cambridge University Press

Datafying the patient voice: the making of pervasive infrastructures as processes of promise, ruination and repair

Author(s): Hoeyer K & H Langstrup
Published in: Healthcare activism. Markets, morals and the collective good, 2021, Page(s) 116-139, ISBN 978019886522
Publisher: Oxford University Press
DOI: 10.1093/oso/9780198865223.003.0005

Ethics as a form of regulation in relation to data and bodily materials

Author(s): Author Klaus Hoeyer Editors Marie-Andrée Jacob and Anna Kirkland
Published in: Research Handbook on Socio-Legal Studies of Medicine and Health, 2020, Page(s) 333-347
Publisher: Edward Elgar Publishing

Other (1)

Liability (and) Rules for Health Information in Health Matrix: The Journal of Law-medicine

Author(s): Jorge L. Contreras & Francisca Nordfalk
Published in: Health Matrix: The Journal of Law-medicine, Issue Volume 29/issue 1, 2019
Publisher: Studnt Journals at Case Western Reserve University School of Law Scholarly Commons

Monographic books (1)

Hvem skal bruge sundhedsdata – og til hvad?

Author(s): Klaus Hoeyer
Published in: 2019
Publisher: Informations Forlag