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 Rapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. Methods A total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences. Results Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples (90% vs. 79%, p = 0.009), sharing information with the health care institution (97% vs. 83%, p < 0.001), sharing information with researchers at other hospitals (85% vs. 70%, p < 0.001), sharing PHI provincially (69% vs. 53%, p < 0.002), nationally (65% vs. 53%, p = 0.022) and internationally (48% vs. 39%, p = 0.024) compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts (50% vs. 51% uncomfortable, p = 0.58). Significantly more pandemic cohort patients expressed a wish to track use of PHI (75% vs. 61%, p = 0.007), and to be notified of results (83% vs. 70%, p = 0.012). Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. Conclusions In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort (~ 50%) remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.

The field of quality improvement and patient safety (QIPS) has matured significantly in emergency medicine over the past decade. From standalone, strategically misaligned, and incoherently designed QIPS projects years ago, emergency department (ED) leaders have now recognized that developing a more robust QIPS infrastructure helps prioritize and organize projects for a greater likelihood of success and impact for patients and the system. This process includes the development of a well-defined, accountable, and supported departmental QIPS committee. This can be achieved effectively using a deliberate and structured approach, such as the one described by Harvard Business School Professor John Kotter in his seminal work, “Leading Change.” Herein, we present a blueprint using this framework and include practical examples from our experience developing a robust and successful ED QIPS committee and infrastructure. The steps include how to develop a “burning platform,” select a guiding coalition of leaders, develop a strategic vision and initiatives, recruit a volunteer army of members, enable actions for the committee, generate short-term successes, sustain the pace of change, and, finally, enable the infrastructure to support ongoing improvements. This road map can be replicated by ED teams of variable sizes and settings to structure, prioritize, and operationalize their QIPS activities and ultimately improve the outcomes of their patients. Supplementary Information The online version contains supplementary material available at 10.1007/s43678-021-00252-2.

PURPOSE For many oncology training programs in low- and middle-income countries, dedicated time for research education and mentorship of trainees is limited. Here, we report a 1-year–long collaboration between a cancer center in Canada and one in Ghana with the aim of imparting clinical research skills and mentoring the research of radiation oncology residents. METHODS On the basis of a needs assessment conducted in Ghana, we designed a curriculum consisting of 13 weekly seminars delivered via videoconference, followed by a 1-year–long mentorship program to support research projects. The primary outcome was the feasibility of the program from seminars to manuscript preparation. We used multiple secondary outcomes to capture the learning experience with study-specific questionnaires. We evaluated critical thinking ability using the Berlin questionnaire. Funding was made available for research and travel to international conferences. RESULTS Five Ghanaian trainees submitted research proposals. Nine Canadian faculty members delivered the seminars and two served as methodology mentors, and two Ghanaian faculty acted as local supervisors. Feedback questionnaires from all participants showed that they agreed strongly that they would recommend the sessions to another resident (75%), that the objectives were clear (71%), and that the topics were useful for their training (73%). At the end of the program, two Ghanaian trainees finalized their manuscripts and one was published. CONCLUSION Here, we report on the implementation of a mentorship program focused on research methods and evidence-based medicine in sub-Saharan Africa. The program was successful in the drafting and publication of abstracts and manuscripts by local trainees.

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