Understanding drug exceptional access programs (DEAPs) in Canada, and their associated social and political issues.

Drug exceptional access programs (DEAPs) exist across Canada to address gaps in access to pharmaceuticals. These programs circumvent standard procedures, raising epistemic, economic, social and political issues. This commentary provides insights into these issues by revealing the context and procedures on which these programs depend.

What are the views of Quebec and Ontario citizens on the tiebreaker criteria for prioritizing access to adult critical care in the extreme context of a COVID-19 pandemic?

BACKGROUND: The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario's protocols were presented to the public in a democratic deliberation during the summer of 2022. OBJECTIVES: (1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. METHODS: This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. RESULTS: A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value - a less acceptable tiebreaker. CONCLUSION: Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Characterizing Canadian Social Workers Willing to Be Involved in Medical Assistance in Dying for Persons Lacking Decisional Capacity.

Medical assistance in dying (MAID) is available in Canada for competent persons meeting the legal requirements. Extending access to persons lacking decisional capacity is being considered. Social workers may be called upon to accompany these persons through the MAID process. As part of a larger survey, we asked social workers from Quebec whether they would be willing to be involved should advance requests for MAID be legalized. Of the 367 respondents, 291 replied that they would. Using multivariable logistic regression, we identified characteristics that distinguish them from the other social workers surveyed: importance of religious or spiritual beliefs, being born in Canada, having received assisted-death requests from families, professional experiences with MAID, and dreading the prospect of participating in MAID for persons lacking decisional capacity. These findings underline the need for educational interventions that would increase social workers' confidence in providing high-quality care to clients who opt for MAID.

Social workers' experiences with medical assistance in dying: Survey findings from Quebec, Canada.

As part of a larger survey, we asked social workers whether they had been involved in medical assistance in dying (MAID) so far. Of the 367 survey participants, 141 reported that they had. These were invited to describe their roles, needs, and sense of competence, focusing on their last MAID experience. Roles were diversified, beginning before and extending beyond the provision of MAID. Nearly 60% needed training on MAID. Perceived competence was lower among those lacking training. Findings point to educational needs that must be addressed to ensure the quality of end-of-life care and the well-being of social workers who engage in MAID.

Support structures for healthcare professionals involved in medical assistance in dying: Quebec, Canada, and the international landscape.

When the Act Respecting End-of-Life Care came into effect in Quebec in 2015, nearly 30 Interdisciplinary Support Groups (ISGs) were formed to accompany practitioners and managers in the clinical, administrative, legal, and ethical practice of Medical Assistance in Dying (MAiD). Today, significant variability is observed in the constitution, role and functioning of ISGs. Based on an overview of national and international support structures, we highlight the strengths and challenges of ISGs. This article presents the results of the first phase of research conducted with 245 people involved in the practice of MAiD in Quebec. The objective is to survey current ISG practices in order to contrast them with those of equivalent structures in Canada and around the world. The intention is to guide leaders in the development of support structures for their institutions. In summary, ISGs are distinguished by their interdisciplinary constitution, their decentralized nature, and their proximity to the teams in the field. However, their service offer remains largely unknown to caregivers and the general population. This can be explained by the undefined and unlimited nature of their mandate, but also by the gap between the scope of their mandate and the lack of funding they receive.

Social Workers' Attitudes Toward Medical Assistance in Dying for Persons With Dementia: Findings From a Survey Conducted in Quebec, Canada.

Canada has legalized medical assistance in dying (MAID) for mentally competent persons who satisfy the legal requirements. Debate is ongoing as to whether MAID should be accessible to no-longer-competent persons through an advance request. We conducted an anonymous vignette-based survey among 367 social workers from Quebec to (1) elicit their attitudes toward MAID in the context of dementia; (2) assess their underlying values and beliefs; and (3) compare their attitudes to those of nurses (n = 291) and physicians (n = 136). Acceptability of MAID among social workers ranges from 42% in the case where the person depicted in the vignette was still competent to request MAID herself, to 92% in that where she was incompetent, had requested MAID in writing before losing capacity, showed signs of severe distress, and was close to death. Acceptability tends to be higher among social workers than among nurses and physicians. Forty-one per cent of social workers dread the prospect of participating in the MAID process for a person lacking decisional capacity. Nonetheless, 83% would agree to be involved. Should MAID become accessible to persons lacking decisional capacity, social workers willing to be involved will need to be educated and trained in participating in this emotionally-charged process.

The Implementation of Assisted Dying in Quebec and Interdisciplinary Support Groups: What Role for Ethics?

The purpose of this text is to tell the story of the implementation of the Act Respecting End-of-Life Care, referred to hereafter as Law 2 (Gouvernement du Québec, 2014) with an emphasis on the ambiguous role of ethics in the Interdisciplinary Support Groups (ISGs), created by Quebec's Ministère de la santé et des services sociaux (MSSS). As established, ISGs provide "clinical, administrative and ethical support to health care professionals responding to a request for Medical aid in dying (MAiD)" (Gouvernement du Québec, 2015). It is suggested that their composition includes the participation of a person with an expertise in ethics. These ISGs represent an important innovation for stakeholders involved in MAiD. To date, no scientific research has specifically addressed ISGs and little research has been conducted in other jurisdictions on the roles, operations and practices of MAiD support structures, especially the implication of ethics. Several ISGs have certainly developed promising practices that could benefit all stakeholders in the wider field of ethics and end of life. We will explore the development of ISGs in Quebec as a support structure for MAiD by highlighting the role that ethics has played (and should play) in these morally and humanly challenging situations.

A qualitative study of physicians' conscientious objections to medical aid in dying.

BACKGROUND: Under Quebec's Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated. AIM: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients' medical aid in dying requests. DESIGN/PARTICIPANTS: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians' motives for their conscientious objections and the reasons behind it. RESULTS: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying. CONCLUSION: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.

Situating requests for medical aid in dying within the broader context of end-of-life care: ethical considerations.

BACKGROUND: Medical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues. METHODS: A retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests. RESULTS: Of 80 patients requesting MAiD, 54% (43) received the intervention. The median number of days between the request for MAiD and the patient's death was 6 days. The majority of palliative care consults (32%) came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 (prolongation of life remains a priority) at the time of the MAiD request and 19% were receiving life-prolonging interventions. INTERPRETATION: We highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians' approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend.

Public voices on tie-breaking criteria and underlying values in COVID-19 triage protocols to access critical care: a scoping review.

Background: To reduce the arbitrariness in the allocation of rare resources in intensive care units (ICU) in the context of the pandemic, tiebreakers were considered in some COVID-19 triage algorithms. They were also contemplated to facilitate the tragic decisions of healthcare workers when faced with two patients with similar prognosis and only one ICU bed available. Little is known about the public's perspective on tiebreakers. Objectives: To consolidate the available scientific literature on public consultations, particularly on tiebreakers and their underlying values. Also, to obtain an overview of the key arguments presented by the participating public and to identify potential gaps related to this topic. Methods: The steps described by Arksey and O'Malley was the preferred method to our approach. Seven electronic databases were searched from January 2020 to April 2022, using keywords for each database: PubMed, Medline, EMBASE, Web of Science, PsycINFO, EBM reviews, CINAHL complete. We also searched in Google and Google Scholar, and in the references of the articles found. Our analysis was mainly qualitative. A thematic analysis was performed to consider the public's perspectives on tiebreakers and their underlying values, according to these studies. Results: Of 477 publications found, 20 were selected. They carried out public consultations through various methods: surveys (80%), interviews (20%), deliberative processes (15%) and others (5%) in various countries: Australia, Brazil, Canada, China, France, Germany, India, Iran, Italy, Japan, Korea, Netherlands, Portugal, Spain, Switzerland, Thailand, United Kingdom, and United States. Five themes emerged from our analysis. The public favored the life cycle (50%) and absolute age (45%) as a tiebreaker. Other values considered important were reciprocity, solidarity, equality, instrumental value, patient merit, efficiency, and stewardship. Among the new findings were a preference for patient nationality and those affected by COVID-19. Conclusions: There is a preference for favoring younger patients over older patients when there is a tie between similar patients, with a slight tendency to favor intergenerational equity. Variability was found in the public's perspectives on tiebreakers and their values. This variability was related to socio-cultural and religious factors. More studies are needed to understand the public's perspective on tiebreakers. Supplementary Information: The online version contains supplementary material available at 10.1007/s44250-023-00027-9.

Automated detection of regions of interest in cartridge case images using deep learning.

This paper explores a deep-learning approach to evaluate the position of circular delimiters in cartridge case images. These delimiters define two regions of interest (ROI), corresponding to the breech face and the firing pin impressions, and are placed manually or by an image-processing algorithm. This positioning bears a significant impact on the performance of the image-matching algorithms for firearm identification, and an automated evaluation method would be beneficial to any computerized system. Our contribution consists in optimizing and training U-Net segmentation models from digital images of cartridge cases, intending to locate ROIs automatically. For the experiments, we used high-resolution 2D images from 1195 samples of cartridge cases fired by different 9MM firearms. Our results show that the segmentation models, trained on augmented data sets, exhibit a performance of 95.6% IoU (Intersection over Union) and 99.3% DC (Dice Coefficient) with a loss of 0.014 for the breech face images; and a performance of 95.9% IoU and 99.5% DC with a loss of 0.011 for the firing pin images. We observed that the natural shapes of predicted circles reduce the performance of segmentation models compared with perfect circles on ground truth masks suggesting that our method provide a more accurate segmentation of the real ROI shape. In practice, we believe that these results could be useful for firearms identification. In future work, the predictions may be used to evaluate the quality of delimiters on specimens in a database, or they could determine the region of interest on a cartridge case image.

Fantastic perspectives and where to find them: involving patients and citizens in digital health research.

BACKGROUND: Digital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process. Their contribution supports the acceptability of such apps, by providing upstream evidence on incentives and potential barriers that are most relevant to users. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to better integrate public perspectives on these apps. In this paper, we present the co-construction process that led to the survey instrument used in the DIGICIT project and the interpretation of its results. This approach promotes public participation in research on contact tracing and exposure notification apps, as well as related digital health applications. OBJECTIVES: This article has three objectives: (1) describe the methodological process to co-construct a questionnaire and interpret the survey results with patients and citizens, (2) assess their experiences regarding this methodology, and (3) propose best practices for their involvement in digital health research. METHODS: The DIGICIT project was developed in four steps: (1) creation of the advisory committee composed of patients and citizens, (2) co-construction of a questionnaire, (3) interpretation of survey results, and (4) assessment of the experience of committee participants. RESULTS: Of the 25 applications received for participation in the advisory committee, we selected 12 people based on pre-established diversity criteria. Participants initially generated 84 survey questions in the first co-construction meeting, and eventually selected 36 in the final version. Participants made more than 20 recommendations when interpreting survey results and suggested carrying out focus groups with marginalized populations to increase representativity. They appreciated their inclusion early in the research process, being listened to and respected, the collective intelligence, and the method used for integrating their suggestions. They suggested that the study objectives and roles be better defined, that more time in the brainstorming sessions be allowed, and that discussion outside of meetings be encouraged. CONCLUSION: Having patients and citizens actively participating in this research constitutes the main methodological strength. They enriched the study from start to finish, and recommended the addition of focus groups to seek the perspective of marginalized groups that are typically under-represented from digital health research. Clear communication of the project objectives, good organization in meetings, and continuous evaluation from participants allow best practices to be achieved for patients' and citizens' involvement in digital health research. Co-construction in research generates critical study design ideas through collective intelligence. This methodology can be used in various clinical contexts and different healthcare settings.

COVID Alert is a mobile application (app) that was developed created to help limit the spread of COVID-19 in Canada. Although promising, these apps have not been widely used by the population, in part due to limited citizen engagement in their design. The DIGICIT project (DIGITal CITizenship) was carried out in partnership with citizens, including patients, to gather public perspective in Quebec, Canada about the COVID Alert app. The purpose of this article is to describe our method of constructing a survey questionnaire with patients and citizens. We have created an advisory committee of 12 participants. Along with the research team, they created a 36-question survey. They also suggested doing focus groups to add data to the survey by reaching marginalized groups that are traditionally excluded from digital health research. We also wanted to know the experience of the participants being included in this study. We conducted interviews and did a small survey with them. They appreciated being included from the beginning of the research, being listened to, and being respected. They appreciated the creativity of the group and the brainstorming sessions. However, they would have liked the tasks to be clearer from the start. They also would have preferred to have more time in the brainstorming sessions to create the survey questions, and to have discussions outside of the meetings. The inclusion of patients and citizens is the main strength of this project. To improve their integration in health research, there needs to be good communication of project objectives. Also, meetings must be well organized, and participants must be able to evaluate their experience.

Public Perspectives on Exposure Notification Apps: A Patient and Citizen Co-Designed Study.

Canada deployed a digital exposure notification app (COVID Alert) as a strategy to support manual contact tracing. Our aims are to (1) assess the use, knowledge, and concerns of the COVID Alert app, (2) identify predictors of app downloads, and (3) develop strategies to promote social acceptability. A 36-item questionnaire was co-designed by 12 citizens and patients partnered with 16 academic researchers and was distributed in the province of Québec, Canada, from May 27 to 28 June 2021. Of 959 respondents, 43% had downloaded the app. Messaging from government sources constituted the largest influence on app download. Infrequent social contacts and perceived app inefficacy were the main reasons not to download the app. Cybersecurity, data confidentiality, loss of privacy, and geolocation were the most frequent concerns. Nearly half of the respondents inaccurately believed that the app used geolocation. Most respondents supported citizen involvement in app development. The identified predictors for app uptake included nine characteristics. In conclusion, this project highlights four key themes on how to promote the social acceptability of such tools: (1) improved communication and explanation of key app characteristics, (2) design features that incentivize adoption, (3) inclusive socio-technical features, and (4) upstream public partnership in development and deployment.