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Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics
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, appropria...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Georg Thieme Verlag KG
2018
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6115213/ https://www.ncbi.nlm.nih.gov/pubmed/30157520 http://dx.doi.org/10.1055/s-0038-1641219 |
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author | Lea, Nathan C. Nicholls, Jacqueline Fitzpatrick, Natalie K. |
author_facet | Lea, Nathan C. Nicholls, Jacqueline Fitzpatrick, Natalie K. |
author_sort | Lea, Nathan C. |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-6115213 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Georg Thieme Verlag KG |
record_format | MEDLINE/PubMed |
spelling | pubmed-61152132019-04-01 Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics Lea, Nathan C. Nicholls, Jacqueline Fitzpatrick, Natalie K. Yearb Med Inform 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. Georg Thieme Verlag KG 2018-08 2018-08-29 /pmc/articles/PMC6115213/ /pubmed/30157520 http://dx.doi.org/10.1055/s-0038-1641219 Text en https://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License, which permits unrestricted reproduction and distribution, for non-commercial purposes only; and use and reproduction, but not distribution, of adapted material for non-commercial purposes only, provided the original work is properly cited. |
spellingShingle | Lea, Nathan C. Nicholls, Jacqueline Fitzpatrick, Natalie K. Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics |
title | Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics |
title_full | Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics |
title_fullStr | Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics |
title_full_unstemmed | Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics |
title_short | Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics |
title_sort | between scylla and charybdis: charting the wicked problem of reusing health data for clinical research informatics |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6115213/ https://www.ncbi.nlm.nih.gov/pubmed/30157520 http://dx.doi.org/10.1055/s-0038-1641219 |
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