13 research outputs found

    Barriers to Including Indigenous Content in Canadian Health Professions Curricula

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    Indigenous peoples in Canada continue to face health care inequities despite their increased risk for various negative health outcomes. Evidence suggests that health professions students and faculty do not feel their curriculum adequately prepares learners to address these inequities. The aim of this study was to identify barriers that hinder the inclusion of adequate Indigenous content in curricula across health professions programs. Semi-structured interviews were conducted with 33 faculty members at a university in Canada from various health disciplines. Employing thematic analysis, four principal barriers were identified: (1) the limited number and overburdening of Indigenous faculty, (2) the need for non-Indigenous faculty training and capacity, (3) the lack of oversight and direction regarding curricular content and training approaches, and (4) the limited amount of time in curriculum and competing priorities. Addressing these barriers is necessary to prepare learners to provide equitable health care for Indigenous peoples. Keywords: Indigenous health, health professions, curricula, faculty perspectives, barriers, CanadaMalgré leur risque accru de développer des ennuis de santé, les Autochtones du Canada continuent de subir des inégalités en matière de soins de santé. Les données existantes révèlent que les étudiants en formation pour devenir des professionnels de la santé et leurs professeurs estiment que leurs programmes d’études actuels ne les préparent pas adéquatement à s’attaquer à ces inégalités. L’objectif de cette étude était d’identifier les obstacles qui entravent l’inclusion de contenu autochtone adéquat dans les programmes d’études de la formation des professionnels de la santé. Des entrevues semi-structurées ont été menées avec 33 membres du corps enseignant, issus de diverses disciplines de la santé, d’une université du Canada. Une analyse thématique a permis d’identifier quatre principaux obstacles : 1) le nombre insuffisant de professeurs autochtones et la surcharge de travail qui en résulte ; 2) la nécessité d’accroître la formation et la capacité des professeurs non autochtones ; 3) le manque de supervision et d’orientation concernant le contenu des programmes et les approches de formation ; et 4) le temps limité qui entraîne une concurrence de priorité des thèmes abordés. Il est nécessaire de surmonter ces obstacles pour préparer les étudiants à fournir des soins de santé sûrs et équitables aux Autochtones. Mots-clés : santé des Autochtones, professionnels de la santé, programmes d’études, perspectives du corps enseignant, obstacles, Canad

    Secondary findings in inherited heart conditions: a genotype-first feasibility study to assess phenotype, behavioural and psychosocial outcomes.

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    Funder: DH | National Institute for Health Research (NIHR); doi: https://doi.org/10.13039/501100000272Funder: RCUK | Medical Research Council (MRC); doi: https://doi.org/10.13039/501100000265Funder: Rhodes Scholarships; doi: https://doi.org/10.13039/501100000697Funder: Wellcome Trust (Wellcome); doi: https://doi.org/10.13039/100004440Funder: British Heart Foundation (BHF); doi: https://doi.org/10.13039/501100000274Disclosing secondary findings (SF) from genome sequencing (GS) can alert carriers to disease risk. However, evidence around variant-disease association and consequences of disclosure for individuals and healthcare services is limited. We report on the feasibility of an approach to identification of SF in inherited cardiac conditions (ICC) genes in participants in a rare disease GS study, followed by targeted clinical evaluation. Qualitative methods were used to explore behavioural and psychosocial consequences of disclosure. ICC genes were analysed in genome sequence data from 7203 research participants; a two-stage approach was used to recruit genotype-blind variant carriers and matched controls. Cardiac-focused medical and family history collection and genetic counselling were followed by standard clinical tests, blinded to genotype. Pathogenic ICC variants were identified in 0.61% of individuals; 20 were eligible for the present study. Four variant carriers and seven non-carrier controls participated. One variant carrier had a family history of ICC and was clinically affected; a second was clinically unaffected and had no relevant family history. One variant, in two unrelated participants, was subsequently reclassified as being of uncertain significance. Analysis of qualitative data highlights participant satisfaction with approach, willingness to follow clinical recommendations, but variable outcomes of relatives' engagement with healthcare services. In conclusion, when offered access to SF, many people choose not to pursue them. For others, disclosure of ICC SF in a specialist setting is valued and of likely clinical utility, and can be expected to identify individuals with, and without a phenotype

    Stakeholder views on secondary findings in whole-genome and whole-exome sequencing:a systematic review of quantitative and qualitative studies

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    Purpose: As whole-exome and whole-genome sequencing (WES/WGS) move into routine clinical practice, it is timely to review data that might inform the debate around secondary findings (SF) and the development of policies that maximize participant benefit. Methods: We systematically searched for qualitative and quantitative studies that explored stakeholder views on SF in WES/WGS. Framework analysis was undertaken to identify major themes. Results: 44 articles reporting the views of 11,566 stakeholders were included. Stakeholders were broadly supportive of returning ‘actionable’ findings, but definitions of actionability varied. Stakeholder views on SF disclosure exist along a spectrum: potential WES/WGS recipients’ views were largely influenced by a sense of rights, while views of genomics professionals were informed by a sense of professional responsibility. Experience of genetic illness and testing resulted in greater caution about SF, suggesting that truly informed decisions require an understanding of the implications and limitations of WES/WGS and possible findings. Conclusion: This review suggests that bidirectional interaction during consent might best facilitate informed decision-making about SF, and that dynamic forms of consent, allowing for changing preferences, should be considered. Research exploring views from wider perspectives and from recipients who have received SF is critical if evidence-based policies are to be achieved.</p

    Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies

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    Purpose: As whole-exome and whole-genome sequencing (WES/WGS) move into routine clinical practice, it is timely to review data that might inform the debate around secondary findings (SF) and the development of policies that maximize participant benefit. Methods: We systematically searched for qualitative and quantitative studies that explored stakeholder views on SF in WES/WGS. Framework analysis was undertaken to identify major themes. Results: 44 articles reporting the views of 11,566 stakeholders were included. Stakeholders were broadly supportive of returning ‘actionable’ findings, but definitions of actionability varied. Stakeholder views on SF disclosure exist along a spectrum: potential WES/WGS recipients’ views were largely influenced by a sense of rights, while views of genomics professionals were informed by a sense of professional responsibility. Experience of genetic illness and testing resulted in greater caution about SF, suggesting that truly informed decisions require an understanding of the implications and limitations of WES/WGS and possible findings. Conclusion: This review suggests that bidirectional interaction during consent might best facilitate informed decision-making about SF, and that dynamic forms of consent, allowing for changing preferences, should be considered. Research exploring views from wider perspectives and from recipients who have received SF is critical if evidence-based policies are to be achieved.</p

    Rare Disease Education Outside of the Classroom and Clinic: Evaluation of the RARE Compassion Program for Undergraduate Medical Students

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    Launched in 2014, the RARE Compassion Program is the first international educational program to pair medical students with rare disease patients in order to enhance exposure to and comfort with rare diseases. As part of ongoing quality improvement, this study retrospectively reviewed four years of participant registration data to conduct a program evaluation of the RARE Compassion Program between 2014&ndash;2018. During the study period, there were 334 student participants, representing 67.3% of Association of American Medical Colleges (AAMC) member medical schools, and 5389 rare disease volunteers. Despite not requiring in-person interaction, 90.64% of student&ndash;volunteer interactions were in-person, while only 5.89% and 3.46% were by video messaging or email correspondence, respectively (p = 0.0002). In a limited post participation survey, 91.7% of students, who matched to 19 out of 27 residency specialities, indicated they would recommend the program to their peers. These findings suggest that the RARE Compassion Program, designed to increase medical student engagement with rare disease patients, has broad appeal. It serves as a novel case study of how extracurricular initiatives supported by non-profit organizations can augment the medical training experience and improve understanding of important and often neglected perspectives

    Hanford 100-D Area Biostimulation Soluble Substrate Field Test: Interim Data Summary for the Substrate Injection and Process Monitoring Phases of the Field Test

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    Pacific Northwest National Laboratory is conducting a treatability test designed to demonstrate that in situ biostimulation can be applied to help meet cleanup goals in the Hanford Site 100-D Area. The in situ biostimulation technology is intended to provide supplemental treatment upgradient of the In Situ Redox Manipulation (ISRM) barrier by reducing the concentration of the primary oxidizing species in groundwater (i.e., nitrate and dissolved oxygen) and chromate, and thereby increasing the longevity of the ISRM barrier. This report summarizes the initial results from field testing of an in situ biological treatment zone implemented through injection of a soluble substrate. The field test is divided into operational phases that include substrate injection, process monitoring, and performance monitoring. The results summarized herein are for the substrate injection and process monitoring phase encompassing the first approximately three months of field testing. Performance monitoring is ongoing at the time this report was prepared and is planned to extend over approximately 18 months. As such, this report is an interim data summary report for the field test. The treatability testing has multiple objectives focused on evaluating the performance of biostimulation as a reducing barrier for nitrate, oxygen, and chromate. The following conclusions related to these objectives are supported by the data provided in this report. Substrate was successfully distributed to a radius of about 15 m (50 ft) from the injection well. Monitoring data indicate that microbial growth initiated rapidly, and this rapid growth would limit the ability to inject substrate to significantly larger zones from a single injection well. As would be expected, the uniformity of substrate distribution was impacted by subsurface heterogeneity. However, subsequent microbial activity and ability to reduce the targeted species was observed throughout the monitored zone during the process monitoring period, and low nitrate and oxygen concentrations were maintained. Chromate concentrations in the treatment zone began to increase about two months after substrate injection, up to about 30 percent of the background concentration upgradient of the test site. The performance monitoring phase will provide additional data to interpret the performance of the biostimulation process and information for scale-up as a reducing barrier
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