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Patients' perspectives on opt-out consent for observational research: systematic review and focus group
Luca Cardillo1, Fidelma Cahill2, Harriet Wylie3
1Medical Student, King's College London, School of Cancer and Pharmaceutical Sciences, Translational Oncology & Urology Research.
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.