CC BY-NC-ND 4.0 · Yearb Med Inform 2018; 27(01): 170-176
DOI: 10.1055/s-0038-1641219
Section 8: Clinical Research Informatics
Survey
Georg Thieme Verlag KG Stuttgart

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

Nathan C. Lea
1  Institute of Health Informatics, University College London, England
,
Jacqueline Nicholls
2  Institute for Women's Health, University College London, England
,
Natalie K. Fitzpatrick
1  Institute of Health Informatics, University College London, England
› Author Affiliations
Further Information

Publication History

Publication Date:
29 August 2018 (online)

  

Summary

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.