UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics

Lea, NC; Nicholls, J; Fitzpatrick, NK; (2018) Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics. Yearbook of Medical Informatics , 27 (1) pp. 170-176. 10.1055/s-0038-1641219. Green open access

[img]
Preview
Text
Lea_Between Scylla_Charybdis.pdf - Published version

Download (646kB) | Preview

Abstract

OBJECTIVES:  Recognising dilemmas posed by the sharing and reuse of health data as a classic wicked problem and uncover some current key challenges to clinical research informatics. METHODS:  A modified thematic review process including identification of agreed critical research questions, appropriate query terms and search strategy, identification of relevant papers in accordance with inclusion criteria, and authors' co-review of full text papers. RESULTS:  Queries returned 4,779 papers published between January 2014 and November 2017. A shortlist of 197 abstracts was analysed and 18 papers were finally selected for review. Thematic assessment of findings revealed four key challenges: (1) uncertain reliability of consent as a cornerstone of trust due to the limits to understanding and awareness of data sharing; (2) ethical challenges around equity and autonomy; (3) ambitious overly theoretical governance frameworks lacking practical validity; and (4) a clear desire for further public and individual engagement to achieve clearer and more nuanced knowledge dissemination around data sharing practice and governance frameworks. CONCLUSIONS:  Understanding the wicked problem of reusing clinically acquired health data for research purposes is essential if clinical research is to benefit from informatics advances. A lack of understanding around the context of data acquisition and sharing undermines the foundations of patient-professional trust. Efforts to protect privacy, where tailoring to specific contexts is a key driver, should support the development of solutions which more adequately honour privacy needs, justify access, and protect equity and autonomy.

Type: Article
Title: Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics
Location: Germany
Open access status: An open access version is available from UCL Discovery
DOI: 10.1055/s-0038-1641219
Publisher version: https://doi.org/10.1055/s-0038-1641219
Language: English
Additional information: This is an Open Access article published under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) licence (https://creativecommons.org/licenses/by-nc-nd/4.0/).
Keywords: Clinical research, informatics, privacy, ethics, access and data sharing, trust, consent, public engagement and involvement
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > Clinical Epidemiology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health
URI: https://discovery.ucl.ac.uk/id/eprint/10055514
Downloads since deposit
42Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item