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Open Access 01-12-2021 | Research

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

Authors: Elizabeth Hutchings, Max Loomes, Phyllis Butow, Frances M. Boyle

Published in: Systematic Reviews | Issue 1/2021

Abstract

Background

We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. To better understand the current literature available, we conducted a systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data.

Methods

EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility and two authors were involved in the full-text review process. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative studies.

Results

This paper focuses on a subset of 47 articles identified from the wider search and focuses on the issue of consent. Issues related to privacy, trust and transparency, and attitudes of healthcare professionals and researchers to secondary use and sharing of data have been dealt with in previous publications. Studies included a total of 216,149 respondents. Results indicate that respondents are generally supportive of using health data for research, particularly if the data is de-identified or anonymised. The requirement by participants to obtain consent prior to the use of health data for research was not universal, nor is the requirement for this always supported by legislation. Many respondents believed that either no consent or being informed of the research, but not providing additional consent, were sufficient.

Conclusions

These results indicate that individuals should be provided with information and choice about how their health data is used and, where feasible, a mechanism to opt-out should be provided. To increase the acceptability of using health data for research, health organisations and data custodians must provide individuals with concise information about data protection mechanisms and under what circumstances their data may be used and by whom.

Systematic review registration

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Title: A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent
Authors: Elizabeth Hutchings
Max Loomes
Phyllis Butow
Frances M. Boyle
Publication date: 01-12-2021
Publisher: BioMed Central
Published in: Systematic Reviews / Issue 1/2021
Electronic ISSN: 2046-4053
DOI: https://doi.org/10.1186/s13643-021-01663-z

At a glance: The STEP trials

Springer Medicine

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

Abstract

Background

Methods

Results

Conclusions

Systematic review registration

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Systematic review registration

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