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Tytuł:
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Patients' perspectives on opt-out consent for observational research: systematic review and focus group.
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Autorzy:
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Cardillo, Luca
Cahill, Fidelma
Wylie, Harriet
Williams, Ambi
Zylstra, Janine
Davies, Andrew
Fullwood, Louise
Van Hemelrijck, Mieke
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Temat:
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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
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Źródło:
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British Journal of Nursing. 12/15/2018, Vol. 27 Issue 22, p1321-1329. 9p.
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Terminy geograficzne:
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ENGLAND
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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. [ABSTRACT FROM AUTHOR]
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