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.
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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 > School of Life and Medical 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-pp.ucl.ac.uk/id/eprint/10055514 |
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