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Patients’ perspectives on opt-out consent for observational research: systematic review and focus group

Research output: Contribution to journalArticle

Luca Cardillo, Fidelma Cahill, Harriet Wylie, Ambi Williams, Janine Louise Zylstra, Andrew Richard Davies, Louise Fullwood, Mieke Van Hemelrijck

Original languageEnglish
Pages (from-to)1321-1329
JournalBritish Journal of Nursing
Volume27
Issue number22
Early online date10 Dec 2018
DOIs
Publication statusPublished - 10 Dec 2018

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Abstract

Background:
observational research is increasingly important in clinical decision-making. Opt-out consent has been proposed as a more practical way to obtain participants' consent for such research. The authors evaluated patients' views on opt-out consent for observational research by identifying perceived benefits and barriers.

Methods:
following a systematic literature review of research on participants' perspectives on opt-out consent, a focus group interview was conducted with oncological patients and their family members.

Results:
the review identified 13 articles detailing perspectives on opt-out consent. Perceived advantages included benefitting medicine and future generations. These findings were confirmed in the focus group. The main reported barriers to opt-out consent are concerns regarding privacy and the sharing of data with third parties. Participants also demonstrated concerns on insufficient education on opt-out consent.

Conclusion:
participants demonstrated willingness to participate in observational studies utilising opt-out consent. Special focus should be placed on outlining existing safeguards in research.

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