We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- Title
Patients' perspectives on opt-out consent for observational research: systematic review and focus group.
- Authors
Cardillo, Luca; Cahill, Fidelma; Wylie, Harriet; Williams, Ambi; Zylstra, Janine; Davies, Andrew; Fullwood, Louise; Van Hemelrijck, Mieke
- 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.
- Subjects
ENGLAND; CANCER patients; COMMUNICATION; FAMILIES; FOCUS groups; INFORMED consent (Medical law); INTERVIEWING; MEDICAL ethics; MEDLINE; SCIENTIFIC observation; ONLINE information services; PHARMACEUTICAL industry; PRIVACY; PUBLIC opinion; TRUST; PATIENT participation; SYSTEMATIC reviews; THEMATIC analysis; DATA security; RESEARCH personnel; DATA analysis software; HUMAN research subjects; PATIENTS' attitudes; EDUCATION
- Publication
British Journal of Nursing, 2018, Vol 27, Issue 22, p1321
- ISSN
0966-0461
- Publication type
Article
- DOI
10.12968/bjon.2018.27.22.1321