A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent
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 sha...
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| Format: | Article |
| Language: | English |
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BMC
2021-05-01
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| Series: | Systematic Reviews |
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| Online Access: | https://doi.org/10.1186/s13643-021-01663-z |
| _version_ | 1818734397209182208 |
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| author | Elizabeth Hutchings Max Loomes Phyllis Butow Frances M. Boyle |
| author_facet | Elizabeth Hutchings Max Loomes Phyllis Butow Frances M. Boyle |
| author_sort | Elizabeth Hutchings |
| collection | DOAJ |
| description | 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 PROSPERO CRD42018110559 (update June 2020). |
| first_indexed | 2024-12-18T00:04:42Z |
| format | Article |
| id | doaj.art-bb67efc3cefa435ebbb0b52f86838bbb |
| institution | Directory Open Access Journal |
| issn | 2046-4053 |
| language | English |
| last_indexed | 2024-12-18T00:04:42Z |
| publishDate | 2021-05-01 |
| publisher | BMC |
| record_format | Article |
| series | Systematic Reviews |
| spelling | doaj.art-bb67efc3cefa435ebbb0b52f86838bbb2022-12-21T21:27:50ZengBMCSystematic Reviews2046-40532021-05-0110114410.1186/s13643-021-01663-zA systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consentElizabeth Hutchings0Max Loomes1Phyllis Butow2Frances M. Boyle3Northern Clinical School, Faculty of Medicine, The University of SydneySchool of Psychology, The University of SydneySchool of Psychology, The University of SydneyNorthern Clinical School, Faculty of Medicine, The University of SydneyAbstract 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 PROSPERO CRD42018110559 (update June 2020).https://doi.org/10.1186/s13643-021-01663-zConsentSecondary data analysisData sharingAttitudesHealthcare consumers |
| spellingShingle | Elizabeth Hutchings Max Loomes Phyllis Butow Frances M. Boyle A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent Systematic Reviews Consent Secondary data analysis Data sharing Attitudes Healthcare consumers |
| title | A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent |
| title_full | A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent |
| title_fullStr | A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent |
| title_full_unstemmed | A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent |
| title_short | A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent |
| title_sort | systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data a focus on consent |
| topic | Consent Secondary data analysis Data sharing Attitudes Healthcare consumers |
| url | https://doi.org/10.1186/s13643-021-01663-z |
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