The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution
| Autor: | Katherine Lajkosz, Flavio M. Habal, Patricia Murphy, Indu Voruganti, Donald J. Willison, Fei-Fei Liu, Rebecca Wong, Ann Heesters, Sarah Tosoni, Carl Virtanen |
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| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
medicine.medical_specialty
Health (social science) media_common.quotation_subject Trust 03 medical and health sciences 0302 clinical medicine Artificial Intelligence Patient consent preferences Health care Institution medicine Humans Personal health 030212 general & internal medicine Public engagement media_common lcsh:R723-726 Informed Consent business.industry Health Policy Consent policies Patient Preference Data sharing Issues ethics and legal aspects Health Records Personal Philosophy of medicine 030220 oncology & carcinogenesis Family medicine Public trust business lcsh:Medical philosophy. Medical ethics Autonomy Research Article |
| Zdroj: | BMC Medical Ethics, Vol 22, Iss 1, Pp 1-14 (2021) BMC Medical Ethics |
| ISSN: | 1472-6939 |
| Popis: | Background Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results. Results 222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. |
| Databáze: | OpenAIRE |
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