Laboratory-based inequity in thrombosis and hemostasis: review of the evidence.

The concept of normal in hematology, similar to that in other areas of medicine, is anchored to the perspective of those setting the standard. This means that several laboratory reference intervals and approaches to the conditions of thrombosis and hemostasis are influenced by the vantage point of those in power. Structural inequity, including systemic racism and sexism, can lead to inappropriate normalization of disease states, such as anemia or iron deficiency, or delayed diagnoses, such as in von Willebrand disease. This review will focus on how laboratory reference intervals perpetuate the cycles of inequity in care of patients with disorders of thrombosis and hemostasis. We provide examples and case studies in maternal mortality as well as in disorders such as von Willebrand disease and iron deficiency, question physiology versus pathophysiology, acknowledge the distinction between social constructs and biologic influence, and highlight opportunities for much-needed restructuring in areas such as defining anemia and iron deficiency.

Invisible bleeds: Lived experiences and barriers to care for men with hemophilia.

INTRODUCTION: Guidelines of the World Federation of Hemophilia support the provision of equitable, optimal care for people with hemophilia (PWH). However, limited research exists examining the lived experiences of PWH or the barriers to care they may encounter. The primary objective of this exploratory study was to describe the experiences of men with hemophilia in Canada. METHODS: We conducted a qualitative descriptive study using a semistructured interview guide and analyzed transcribed interviews using inductive thematic content analysis. Inclusion criteria were: age ≥18 years, English-speaking, and confirmed diagnosis of inherited hemophilia A or B. RESULTS: A total of 11 participants were interviewed. Median age was 39 years old (29-73 years old), and diagnoses included severe hemophilia A (n = 5), mild hemophilia A (n = 2), and severe hemophilia B (n = 4). Three primary themes arose: (1) impact on identity and daily life; (2) dynamic changes in treatment; and (3) barriers to care and identified needs. Major subthemes included chronic pain and activity limitation, psychosocial burden, and symptom normalization. Multidisciplinary care, coordinated surgical care, improved emergency care, and clear care plans were identified as ongoing needs. DISCUSSION: Men with hemophilia described significant symptom burden and areas of ongoing need. Collaborative efforts between hematologists, emergency room physicians, and surgeons to establish hospital-specific testing, treatment and referral guidelines, and regular hemophilia treatment center audits may help address these care gaps, providing more person-centered, equitable care. Future work is required to implement these strategies and monitor their effects.

Codesigning person-centred quality indicators with diverse communities: A qualitative patient engagement study.

INTRODUCTION: Effective engagement of underrepresented communities in health research and policy remains a challenge due to barriers that hinder participation. Our study had two objectives: (1) identify themes of person-centred care (PCC) from perspectives of diverse patients/caregivers that would inform the development of person-centred quality indicators (PC-QIs) for evaluating the quality of PCC and initiatives to improve PCC and (2) explore innovative participatory approaches to engage ethnocultural communities in qualitative research. METHODS: Drawing on participatory action research methods, we partnered with a community-based organization to train six 'Community Brokers' from the Chinese, Filipino, South Asian, Latino-Hispanic, East African and Syrian communities, who were engaged throughout the study. We also partnered with the provincial health organization to engage their Patient and Family Advisory, who represented further aspects of diversity. We conducted focus group discussions with patients/caregivers to obtain their perspectives on their values, preferences and needs regarding PCC. We identified themes through our study and engaged provincial stakeholders to prioritize these themes for informing the development of PC-QIs and codesign initiatives for improving PCC. RESULTS: Eight focus groups were conducted with 66 diverse participants. Ethnocultural communities highlighted themes related to access and cost of care, language barriers and culture, while the Patient and Family Advisory emphasized patient and caregiver engagement. Together with provincial stakeholders, initiatives were identified to improve PCC, such as codesigning innovative models of training and evaluation of healthcare providers. CONCLUSION: Incorporating patient and community voices requires addressing issues related to equity and understanding barriers to effective and meaningful engagement. PATIENT OR PUBLIC CONTRIBUTION: Patient and public engagement was central to our research study. This included partnership with a community-based organization, with a broad network of ethnocultural communities, as well as the provincial health service delivery organization, who both facilitated the ongoing engagement of diverse patients/caregiver communities throughout our study including designing the study, recruiting participants, collecting and organizing data, interpreting findings and mobilizing knowledge. Drawing from participatory action research methods, patients and the public were involved in the codesign of the PC-QIs and initiatives to improve PCC in the province based on the findings from our study.

Harassment in the Field of Medicine: Cultural Barriers to Psychological Safety.

Psychologically safe organizational cultures are inherently inclusive and promote healthy sharing of power and knowledge. These conditions allow innovation to thrive and optimize member performance. Unfortunately, despite its evidence-based nature, the field of medicine continues to struggle with providing safe environments for its members. Several cultural barriers to psychological safety permit endemic harassment. These include having large power gradients, a weak ethical climate, and a number of enabling structural factors that maintain a toxic culture. Moving toward psychological safety will be challenging work, as it requires a difficult and complex analysis of the shared value system that enables the status quo. Programs and policies that promote equity, diversity, and inclusion are an important start, but they are likely insufficient on their own to achieve psychological safety. Leadership that models difficult reflection and supports inclusive transformation is the key to a safe culture shift.

Les cultures organisationnelles qui favorisent la sécurité psychologique sont intrinsèquement inclusives et favorisent le partage sain du pouvoir et des connaissances. Ces conditions sont un terreau fertile pour l'innovation et l'optimisation du rendement. Malheureusement, bien qu'elle soit par sa nature même fondée sur des données probantes, la médecine est un domaine où l'on peine encore à offrir un environnement sécuritaire. Plusieurs obstacles culturels à la sécurité psychologique permettent un harcèlement endémique, notamment les grands écarts hiérarchiques, un climat éthique déficient et un certain nombre de facteurs structurels favorables au maintien d'une culture toxique. Le cheminement vers la sécurité psychologique est une gageure, car il exige une analyse complexe et difficile du système de valeurs partagées qui donne lieu au statu quo. La mise en place de programmes et de politiques axés sur l'équité, la diversité et l'inclusion constitue un premier pas important, mais ne suffira probablement pas à assurer la sécurité psychologique. Un leadership qui s'engage ouvertement dans une réflexion difficile et soutient une transformation inclusive est la clé du passage à une culture sécuritaire.

How to measure cultural competence when evaluating patient-centred care: a scoping review.

OBJECTIVES: The purpose of this study was to identify patient-centred quality indicators (PC-QI) and measures for measuring cultural competence in healthcare. DESIGN: Scoping review. SETTING: All care settings. SEARCH STRATEGY: A search of CINAHL, EMBASE, MEDLINE, PsycINFO, Social Work Abstracts and SocINDEX, and the grey literature was conducted to identify relevant studies. Studies were included if they reported indicators or measures for cultural competence. We differentiated PC-QIs from measures: PC-QIs were identified as a unit of measurement of the performance of the healthcare system, which reflects what matters to patients and families, and to any individual that is in contact with healthcare services. In contrast, measures evaluate delivery of patient-centred care, in the form of a survey and/or checklist. Data collected included publication year and type, country, ethnocultural groups and mention of quality indicator and/or measures for cultural competence. RESULTS: The search yielded a total of 786 abstracts and sources, of which 16 were included in the review. Twelve out of 16 sources reported measures for cultural competence, for a total of 10 measures. Identified domains from the measures included: physical environment, staff awareness of attitudes and values, diversity training and communication. Two out of 16 sources reported PC-QIs for cultural competence (92 structure and process indicators, and 48 outcome indicators). There was greater representation of structure and process indicators and measures for cultural competence, compared with outcome indicators. CONCLUSION: Monitoring and evaluating patient-centred care for ethnocultural communities allows for improvements to be made in the delivery of culturally competent healthcare. Future research should include development of PC-QIs for measuring cultural competence that also reflect cultural humility, and the involvement of ethnocultural communities in the development and implementation of these indicators.

Understanding the Experiences of East African Immigrant Women With Gestational Diabetes Mellitus.

OBJECTIVES: East African (EA) women are a subpopulation who are at very high risk for gestational diabetes (GDM) and poor obstetric outcomes, but little is known about the care experiences of this understudied group. The objective of this study was to document the impact of a diagnosis of GDM and the perceptions of diabetes care among EA immigrant women. METHODS: Semistructured in-depth interviews were conducted with 10 EA immigrant women diagnosed with GDM in Calgary; they were recruited from community and tertiary care settings. Interviews were transcribed verbatim and analyzed using inductive thematic content analysis to explore participants' experiences when accessing and receiving care. RESULTS: EA immigrant women had varied experiences related to GDM. Thematic analysis revealed the negative impact of GDM diagnoses on women, including the burdens of self-care, fear, community influences and cultural and financial barriers. The positive impacts of the experience of diagnosis noted were primarily in the empowerment to make healthful behaviour changes. CONCLUSIONS: Study findings point to the need for more context-specific and culturally appropriate support and care. Diagnoses of GDM extended beyond the individuals affected and impacted their families culturally, psychologically and financially. Addressing the emergent themes during pregnancy is imperative to improving care providers' engagement with EA immigrant women in postpartum diabetes screening activities and beyond. The findings of this study contain elements transferable to other immigrant groups in similar socioecologic contexts.