Sarah Tosoni1, Indu Voruganti1,2, Katherine Lajkosz3, Flavio Habal4, Patricia Murphy5, Rebecca K S Wong1,2,6, Donald Willison6, Carl Virtanen7, Ann Heesters8,9, Fei-Fei Liu10,11,12. 1. Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada. 2. Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada. 3. Department of Biostatistics, Princess Margaret Cancer Centre, Toronto, ON, Canada. 4. Department of Medicine, University Health Network, Toronto, ON, Canada. 5. Department of Anaesthesia, University Health Network, Toronto, ON, Canada. 6. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. 7. University Health Network Digital, Toronto, ON, Canada. 8. Department of Bioethics, University Health Network, Toronto, ON, Canada. 9. Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada. 10. Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada. Fei-Fei.Liu@rmp.uhn.ca. 11. Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada. Fei-Fei.Liu@rmp.uhn.ca. 12. Princess Margaret Cancer Centre, Department of Radiation Oncology, 700 University Avenue, Toronto, ON, M5G 2M9, Canada. Fei-Fei.Liu@rmp.uhn.ca.
Abstract
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 < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%). 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.
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 < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%). 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.
Entities:
Keywords:
Consent policies; Data sharing; Patient consent preferences
Authors: Donald J Willison; Marilyn Swinton; Lisa Schwartz; Julia Abelson; Cathy Charles; David Northrup; Ji Cheng; Lehana Thabane Journal: BMC Med Ethics Date: 2008-11-19 Impact factor: 2.652
Authors: Sarah Tosoni; Indu Voruganti; Katherine Lajkosz; Shahbano Mustafa; Anne Phillips; S Joseph Kim; Rebecca K S Wong; Donald Willison; Carl Virtanen; Ann Heesters; Fei-Fei Liu Journal: BMC Med Ethics Date: 2022-05-20 Impact factor: 2.834