The design of digital health information systems around a conflated gender/sex binary contributes to health inequities. Lack of specific information that supports affirming communication lead to inappropriate care, disrespectful encounters with healthcare staff, and avoidance of health services by clients who have been harmed by misgendering, deadnaming and being outed. The HL7 International Gender Harmony Model (HL7 GHM) supports the design, implementation and use of DHIS that enable affirming clinical interactions and care.
View Article and Find Full Text PDFIn 2021, Canada Health Infoway and the University of Victoria's Gender, Sex, and Sexual Orientation Research Team hosted a series of discussions to successfully and safely modernize gender, sex, and sexual orientation information practices within digital health systems. Five main topic areas were covered: (1) terminology standards; (2) digital health and electronic health record functions; (3) policy and practice implications; (4) primary care settings; and (5) acute and tertiary care settings. In this viewpoint paper, we provide priorities for future research and implementation projects and recommendations that emerged from these discussions.
View Article and Find Full Text PDFObjectives: Haematology patients are more likely to receive high intensity care near end of life (EOL) than patients with solid malignancy. Previous authors have suggested indicators of quality EOL for haematology patients, based on a solid oncology model. We conducted a retrospective chart review with the objectives of (1) determining our performance on these quality EOL indicators, (2) describing the timing of level of intervention (LOI) discussion and palliative care (PC) consultation prior to death and (3) evaluating whether goals of therapy (GOT), PC consultation and earlier LOI discussion are predictors of quality EOL.
View Article and Find Full Text PDFHere, we report the first comparative analysis of patient-reported outcomes (PROs) with chimeric antigen receptor T-cell therapy vs standard-of-care (SOC) therapy in second-line relapsed/refractory large B-cell lymphoma (R/R LBCL) from the pivotal randomized phase 3 ZUMA-7 study of axicabtagene ciloleucel (axi-cel) vs SOC. PRO instruments were administered at baseline, day 50, day 100, day 150, month 9, and every 3 months from randomization until 24 months or an event-free survival event. The quality of life (QoL) analysis set comprised patients with a baseline and ≥1 follow-up PRO completion.
View Article and Find Full Text PDFObjective: Accurate representation of clinical sex and gender identity in interoperable clinical systems is a major challenge for organizations intent on improving outcomes for sex- and gender-marginalized people. Improved data collection has been hindered by the historical approach that presumed a single, often binary, datum was sufficient. We describe the Health Level Seven International (HL7) Gender Harmony logical model that proposes an improved approach.
View Article and Find Full Text PDFJ Am Med Inform Assoc
January 2022
Most digital health systems (DHS) are unable to capture gender, sex, and sexual orientation (GSSO) data beyond a single binary attribute with female and male options. This binary system discourages access to preventative screening and gender-affirming care for sexual and gender minority (SGM) people. We conducted this 1-year multi-method project and cocreated an action plan to modernize GSSO information practices in Canadian DHS.
View Article and Find Full Text PDFBackground: Outdated gender, sex, and sexual orientation (GSSO) information practices in health care contribute to health inequities for sexual and gender minorities (SGMs). Governments, statistics agencies, and health care organizations are developing and implementing modernized practices that support health equity for SGMs. Extending our work, we conducted a rapid review of grey literature to explore information practices that support quality health care for SGMs.
View Article and Find Full Text PDFBackground: Historically, the terms sex and gender have been used interchangeably as a binary attribute to describe a person as male or female, even though there is growing recognition that sex and gender are distinct concepts. The lack of sex and gender delineation in electronic health records (EHRs) may be perpetuating the inequities experienced by the transgender and gender nonbinary (TGNB) populations.
Objective: This study aims to conduct an environmental scan to understand how sex and gender are defined and implemented in existing Canadian EHRs and current international health information standards.
J Am Med Inform Assoc
November 2020
Objective: The lack of precise and inclusive gender, sex, and sexual orientation (GSSO) data in electronic health records (EHRs) is perpetuating inequities of sexual and gender minorities (SGM). We conducted a rapid review on how GSSO documentation in EHRs should be modernized to improve the health of SGM.
Materials And Methods: We searched MEDLINE from 2015 to 2020 with terms for gender, sex, sexual orientation, and electronic health/medical records.
Very little is known concerning the toxicity of antimony, despite its commercial use as a flame retardant and medical use as a treatment for parasitic infections. Our previous studies show that antimony trioxide (Sb(2)O(3)) induces growth inhibition in patient-derived acute promyelocytic leukemia (APL) cell lines, a disease in which a related metal, arsenic trioxide (As(2)O(3)), is used clinically. However, signaling pathways initiated by Sb(2)O(3) treatment remain undefined.
View Article and Find Full Text PDFArsenic trioxide induces c-jun N-terminal kinase (JNK) activation and apoptosis in acute promyelocytic leukemia (APL), where it has major clinical activity, but whether JNK is necessary to induce apoptosis is unknown. To clarify this necessity, we established 2 arsenic trioxide (As(2)O(3))-resistant subclones of the APL cell line, NB4. Both resistant lines showed little activation of JNK1 following treatment with As(2)O(3), even at doses sufficient to elicit robust activation in NB4 cells.
View Article and Find Full Text PDFThe chimeric protein encoded by the PML-RAR alpha gene that is pathognomonic of acute promyelocytic leukemia (APL) causes the arrest of myeloid cell development at the promyelocyte stage, leading to an accumulation of abnormal promyelocytes in the bone marrow. Differentiation therapy with all-trans retinoic acid (ATRA) is used routinely in patients with APL, but ATRA is not the only agent in clinical use that promotes differentiation of the abnormal clone. Arsenic trioxide (ATO) has been shown to cause degradation of PML-RAR alpha, promoting differentiation.
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