Abstract
BackgroundWe 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.MethodsEMBASE/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.ResultsThis 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.ConclusionsThese 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 registrationPROSPERO CRD42018110559 (update June 2020).
Highlights
We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data
Given the sensitive nature of health data, the Act provides extra protection around its collection and handling [7]. This data can be accessed for health and medical research, and where individual consent is impractical, two legally binding guidelines issued by the National Health and Medical Research Council (NHMRC) [7] add additional protections
This paper presents a synthesis of health consumers’ attitudes towards consent and the use of administrative data and clinical trial data for research purposes. This systematic literature review presents the results of a subset of articles identified in a larger review of articles addressing data sharing which was undertaken in accordance with the PRISMA statement for systematic reviews and meta-analysis [8]
Summary
We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. The use of health data traditionally collected for administrative purposes can be combined (linked) with other datasets to allow better insights into real-world clinical practice and patient outcomes. This data can be used to inform health system design and responsiveness. Given the sensitive nature of health data, the Act provides extra protection around its collection and handling [7] In certain circumstances, this data can be accessed for health and medical research, and where individual consent is impractical, two legally binding guidelines issued by the National Health and Medical Research Council (NHMRC) [7] add additional protections. The second provides a framework for HRECs to assess proposals which use health information without an individuals’ consent (Guidelines under Section 95A of the Act) [7]
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