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

Yearbook of Medical Informatics
Nathan C LeaNatalie K Fitzpatrick

Abstract

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. 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. 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. Understanding the wicked problem of reusing clinically acquired health data for research purposes is essential if clinical research is to ...Continue Reading

Citations

Sep 25, 2019·Current HIV Research·Craig S MayerVojtech Huser
Jun 13, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Teodor ZidaruRich Stockley
Mar 1, 2020·Kidney International·Nicolas GarcelonAntoine Neuraz

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