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

Publications

Peer reviewed articles (26)

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, 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, 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, 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, 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., 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, 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, 49/4, 2019, Page(s) 531-555, ISSN 0306-3127
Publisher: SAGE Publications
DOI: 10.1177/0306312719858697

Concordance as evidence in the Watson for Oncology decision-support system

Author(s): Aaro Tupasela, Ezio Di Nucci
Published in: AI & SOCIETY, 2020, ISSN 0951-5666
Publisher: Springer Verlag
DOI: 10.1007/s00146-020-00945-9

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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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