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Ravi P, Smith M, Bogović S, Lin C, Yaffee A, Dudgeon M, Zeidan A. Characterizing Identifiers for Immigrant Populations in Electronic Health Records. J Immigr Minor Health 2025:10.1007/s10903-025-01698-7. [PMID: 40411732 DOI: 10.1007/s10903-025-01698-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/23/2025] [Indexed: 05/26/2025]
Abstract
The current use of identifiers to describe immigrant patients in Electronic Health Records (EHRs) is poorly described and lacks standardization, but nevertheless has broad implications related to clinical care and research of this population. We conducted interviews with stakeholders to discern strong identifiers for use to identify patients who have immigrated to the United States (U.S.). Language, country of origin, time in the U.S., and race/ethnicity were identified as effective, ethical, and acceptable for use. Limitations of each of these identifiers were noted, highlighting the need to use multiple identifiers in combination when describing patients in EHRs. The processes used to collect these identifiers in clinical settings and the ethical implications of using these identifiers must also be carefully considered. Our results highlight the need for standards related to documentation of immigrant patients in EHRs. Further research is also needed to validate the identifiers we have outlined, discern additional identifiers that are useful and acceptable in specific clinical and research contexts, and explore how strong identifiers can be operationalized in EHRs for clinical, research, and community engagement purposes.
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Affiliation(s)
- Preethi Ravi
- Emory University School of Medicine, Atlanta, USA.
| | - Margaret Smith
- Department of Internal Medicine, University of California, San Diego, USA
| | - Sabrina Bogović
- Emory University Rollins School of Public Health, Atlanta, USA
| | - Camille Lin
- Department of Family Medicine, Prisma Health Tuomey Hospital, Sumter, USA
| | - Anna Yaffee
- Department of Emergency Medicine, Emory University School of Medicine, Atlanta, USA
| | - Matthew Dudgeon
- Department of Medicine, Emory University School of Medicine, Atlanta, USA
| | - Amy Zeidan
- Department of Emergency Medicine, Emory University School of Medicine, Atlanta, USA.
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Tsalidis A, Bharadwaj L, Shen FX. Standardization and accuracy of race and ethnicity data: Equity implications for medical AI. PLOS DIGITAL HEALTH 2025; 4:e0000807. [PMID: 40440407 PMCID: PMC12121746 DOI: 10.1371/journal.pdig.0000807] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 08/19/2024] [Accepted: 02/27/2025] [Indexed: 06/02/2025]
Abstract
The rapid integration of artificial intelligence (AI) into healthcare has raised many concerns about race bias in AI models. Yet, overlooked in this dialogue is the lack of quality control for the accuracy of patient race and ethnicity (r/e) data in electronic health records (EHR). This article critically examines the factors driving inaccurate and unrepresentative r/e datasets. These include conceptual uncertainties about how to categorize races and ethnicity, shortcomings in data collection practices, EHR standards, and the misclassification of patients' race or ethnicity. To address these challenges, we propose a two-pronged action plan. First, we present a set of best practices for healthcare systems and medical AI researchers to improve r/e data accuracy. Second, we call for developers of medical AI models to transparently warrant the quality of their r/e data. Given the ethical and scientific imperatives of ensuring high-quality r/e data in AI-driven healthcare, we argue that these steps should be taken immediately.
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Affiliation(s)
| | - Lakshmi Bharadwaj
- Laboratory of Biochemical Pharmacology, Emory University School of Medicine, Atlanta, Georgia, United States of America
- Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, United States of America
| | - Francis X. Shen
- University of Minnesota Law School, Minneapolis, Minnesota, United States of America
- Massachusetts General Hospital Center for Law, Brain & Behavior, Boston, Massachusetts, United States of America
- Department of Neurosurgery, Dana Foundation Neurotech Justice Accelerator at Mass General Brigham, Boston, Massachusetts, United States of America,
- Center for Bioethics, Harvard Medical School, Boston, Massachusetts, United States of America
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Conn LA, MacDonald G, Campbell B, Eisenstein L, Culpepper A, Fawaz S, Warren VR, Prahlow B, Sheppard M, Carey K, Sunnassee E, Yusuf H, Ritchey MD. Completeness of Data on Race and Ethnicity and Timeliness of Electronic Case Reports for COVID-19 at 4 Health Care Organizations in Florida, December 2020. Public Health Rep 2025:333549241308414. [PMID: 40166915 PMCID: PMC11962915 DOI: 10.1177/00333549241308414] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/02/2025] Open
Abstract
OBJECTIVES Electronic case reporting (eCR), a cornerstone of the Centers for Disease Control and Prevention's (CDC's) Data Modernization Initiative, automates bidirectional information sharing between electronic health records and public health agencies for reportable conditions. eCR grew rapidly in response to the COVID-19 pandemic. CDC and the Florida Department of Health (FDOH) collaborated to compare the completeness and timeliness of eCR with that of traditional reporting methods for COVID-19-related patient encounters at 4 health care organizations in Florida in December 2020. METHODS Electronic initial case reports (eICRs) were matched to corresponding (ie, for same patient encounter) electronic laboratory reports (ELRs) or manually transmitted documents. We extracted and compared selected data from each report type across matched reports for completeness and timeliness. RESULTS Most (>98%) eICRs provided earlier notification of COVID-19 to the local public health department than corresponding ELRs or manually transmitted documents. Additionally, eICRs provided more data on race and ethnicity (>90%) than ELRs (71%) or manually transmitted documents (<5%). CONCLUSIONS Advancing implementation of eCR nationwide may provide more complete and timely case data than ELR or manually transmitted documents to guide public health action.
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Affiliation(s)
- Laura A. Conn
- Office of Public Health Data, Surveillance, and Technology, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | - Goldie MacDonald
- National Center for State, Tribal, Local, and Territorial Public Health Infrastructure and Workforce, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | | | | | | | - Shelby Fawaz
- Florida Department of Health, Tallahassee, FL, USA
| | | | | | - Michael Sheppard
- Office of Public Health Data, Surveillance, and Technology, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | - Kelly Carey
- Office of Public Health Data, Surveillance, and Technology, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | - Emma Sunnassee
- Office of Public Health Data, Surveillance, and Technology, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | - Hussain Yusuf
- Office of Public Health Data, Surveillance, and Technology, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | - Matthew D. Ritchey
- Office of Public Health Data, Surveillance, and Technology, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention, Atlanta, GA, USA
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Long B, Laux S, Lemon B, Guarente A, Davis M, Casadevall A, Fang F, Shi M, Resnik DB. Factors related to the severity of research misconduct administrative actions: An analysis of office of research integrity case summaries from 1993 to 2023. Account Res 2025; 32:417-438. [PMID: 38010310 PMCID: PMC11128533 DOI: 10.1080/08989621.2023.2287046] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/07/2023] [Accepted: 11/20/2023] [Indexed: 11/29/2023]
Abstract
We extracted, coded, and analyzed data from 343 Office of Research Integrity (ORI) case summaries published in the Federal Register and other venues from May 1993 to July 2023 to test hypotheses concerning the relationship between the severity of ORI administrative actions and various demographic and institutional factors. We found that factors indicative of the severity of the respondent's misconduct or a pattern of misbehavior were associated with the severity of ORI administrative actions. Being required by ORI to retract or correct publications and aggravating factors, such as interfering with an investigation, were both positively associated with receiving a funding debarment and with receiving an administrative action longer than three years. Admitting one's guilt and being found to have committed plagiarism (only) were negatively associated with receiving a funding debarment but were neither positively nor negatively associated with receiving an administrative action longer than three years. Other factors, such as the respondent's race/ethnicity, gender, academic position, administrative position, or their institution's NIH funding level or extramural vs. intramural or foreign vs. US status, were neither positively nor negatively associated with the severity of administrative actions. Overall, our findings suggest that ORI has acted fairly when imposing administrative actions on respondents and has followed DHHS guidelines.
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Affiliation(s)
- Brandon Long
- Philosophy, Bowling Green State University, Bowling Green, KY, USA
| | - Savannah Laux
- Philosophy, Mount Saint Mary College, Newburgh, NY, USA
| | | | | | | | - Arturo Casadevall
- Microbiology and Immunology, Johns Hopkins University, Baltimore, MD, USA
| | - Ferric Fang
- Microbiology, University of Washington, Seattle, WA, USA
| | - Min Shi
- Biostatistics, National Institute of Environmental Health Sciences, Research Triangle Park, NC, USA
| | - David B. Resnik
- Bioethics, National Institute of Environmental Health Sciences, Research Triangle Park, NC, USA
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Brown CC, Thomsen M, Amick BC, Tilford JM, Bryant-Moore K, Gomez-Acevedo H. Fairness in Low Birthweight Predictive Models: Implications of Excluding Race/Ethnicity. J Racial Ethn Health Disparities 2025:10.1007/s40615-025-02296-x. [PMID: 39881067 DOI: 10.1007/s40615-025-02296-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/06/2024] [Revised: 01/08/2025] [Accepted: 01/19/2025] [Indexed: 01/31/2025]
Abstract
CONTEXT To evaluate algorithmic fairness in low birthweight predictive models. STUDY DESIGN This study analyzed insurance claims (n = 9,990,990; 2013-2021) linked with birth certificates (n = 173,035; 2014-2021) from the Arkansas All Payers Claims Database (APCD). METHODS Low birthweight (< 2500 g) predictive models included four approaches (logistic, elastic net, linear discriminate analysis, and gradient boosting machines [GMB]) with and without racial/ethnic information. Model performance was assessed overall, among Hispanic individuals, and among non-Hispanic White, Black, Native Hawaiian/Other Pacific Islander, and Asian individuals using multiple measures of predictive performance (i.e., AUC [area under the receiver operating characteristic curve] scores, calibration, sensitivity, and specificity). RESULTS AUC scores were lower (underperformed) for Black and Asian individuals relative to White individuals. In the strongest performing model (i.e., GMB), the AUC scores for Black (0.718 [95% CI: 0.705-0.732]) and Asian (0.655 [95% CI: 0.582-0.728]) populations were lower than the AUC for White individuals (0.764 [95% CI: 0.754-0.775 ]). Model performance measured using AUC was comparable in models that included and excluded race/ethnicity; however, sensitivity (i.e., the percent of records correctly predicted as "low birthweight" among those who actually had low birthweight) was lower and calibration was weaker, suggesting underprediction for Black individuals when race/ethnicity were excluded. CONCLUSIONS This study found that racially blind models resulted in underprediction and reduced algorithmic performance, measured using sensitivity and calibration, for Black populations. Such under prediction could unfairly decrease resource allocation needed to reduce perinatal health inequities. Population health management programs should carefully consider algorithmic fairness in predictive models and associated resource allocation decisions.
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Affiliation(s)
- Clare C Brown
- Department of Health Policy and Management, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, 4301 W Markham St Slot #820-12, Little Rock, AR, 72205, USA.
| | - Michael Thomsen
- Department of Health Policy and Management, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, 4301 W Markham St Slot #820-12, Little Rock, AR, 72205, USA
| | - Benjamin C Amick
- Department of Epidemiology, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, AR, USA
| | - J Mick Tilford
- Department of Health Policy and Management, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, 4301 W Markham St Slot #820-12, Little Rock, AR, 72205, USA
| | - Keneshia Bryant-Moore
- Department of Health Behavior and Health Education, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, AR, USA
| | - Horacio Gomez-Acevedo
- Department of Biomedical Informatics, College of Medicine, University of Arkansas for Medical Sciences, Little Rock, AR, USA
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Abulibdeh R, Tu K, Butt DA, Train A, Crampton N, Sejdić E. Assessing the capture of sociodemographic information in electronic medical records to inform clinical decision making. PLoS One 2025; 20:e0317599. [PMID: 39823404 PMCID: PMC11741650 DOI: 10.1371/journal.pone.0317599] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/04/2024] [Accepted: 01/01/2025] [Indexed: 01/19/2025] Open
Abstract
There is a growing need to document sociodemographic factors in electronic medical records to produce representative cohorts for medical research and to perform focused research for potentially vulnerable populations. The objective of this work was to assess the content of family physicians' electronic medical records and characterize the quality of the documentation of sociodemographic characteristics. Descriptive statistics were reported for each sociodemographic characteristic. The association between the completeness rates of the sociodemographic data and the various clinics, electronic medical record vendors, and physician characteristics was analyzed. Supervised machine learning models were used to determine the absence or presence of each characteristic for all adult patients over the age of 18 in the database. Documentation of marital status (51.0%) and occupation (47.2%) were significantly higher compared to the rest of the variables. Race (1.4%), sexual orientation (2.5%), and gender identity (0.8%) had the lowest documentation rates with a 97.5% missingness rate or higher. The correlation analysis for vendor type demonstrated that there was significant variation in the availability of marital and occupation information between vendors (χ2 > 6.0, P < 0.05). Variability in documentation between clinics indicated that the majority of characteristics exhibited high variation in completeness rates with the highest variation for occupation (median: 47.2, interquartile range: 60.6%) and marital status (median: 45.6, interquartile: 59.7%). Finally, physician sex, years since a physician graduated, and whether a physician was a foreign vs a Canadian medical graduate were significantly associated with documentation rates of place of birth, citizenship status, occupation, and education in the electronic medical records. Our findings suggest a crucial need to implement better documentation strategies for sociodemographic information in the healthcare setting. To improve completeness rates, healthcare systems should monitor, encourage, enforce, or incentivize sociodemographic data collection standards.
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Affiliation(s)
- Rawan Abulibdeh
- Department of Electrical and Computer Engineering, University of Toronto, Toronto, Ontario, Canada
| | - Karen Tu
- Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada
- North York General Hospital, Toronto, Ontario, Canada
- Toronto Western Hospital Family Health Team, University Health Network, Toronto, Ontario, Canada
| | - Debra A. Butt
- Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada
- Department of Family and Community Medicine, Scarborough Health Network, Scarborough, Ontario, Canada
| | - Anthony Train
- Department of Family Medicine, Queen’s University, Kingston, Ontario, Canada
| | - Noah Crampton
- Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada
| | - Ervin Sejdić
- Department of Electrical and Computer Engineering, University of Toronto, Toronto, Ontario, Canada
- North York General Hospital, Toronto, Ontario, Canada
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7
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Craven SA, Sim JAP, Cranston KD, Jung ME. "People Need to Know; We're Part of the Community. We're Here.": Examining Experiences of Sharing Demographic Information for a Community-Based Diabetes Prevention Program. COMMUNITY HEALTH EQUITY RESEARCH & POLICY 2024:2752535X241306555. [PMID: 39660555 DOI: 10.1177/2752535x241306555] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/12/2024]
Abstract
BACKGROUND Collecting demographic data is critical for identifying inequities in healthcare services and delivery. Inaccurate collection of demographic data can make developing equitable health interventions and improving reach of existing interventions difficult. This study aimed to (a) examine experiences in completing a community-based type 2 diabetes prevention program Small Steps for Big Changes (SSBC) demographic questionnaire (SSBC-DQ) among adults from equity-owed groups, and (b) assess recommendations for improvement to the questionnaire. METHODS Adults with no prior involvement in SSBC were recruited. Participants completed the SSBC-DQ online and then engaged in one-on-one structured interviews. Interview data was analyzed using interpretive description and coded using the APEASE criteria. RESULTS Twelve participant interviews were included in analysis. Five principle themes were developed to capture the experiences of completing the SSBC-DQ: representation, comprehension, demographics are an emotional experience, the role that privilege plays, and beliefs about demographic data. Sixty suggested changes were coded using the APEASE criteria; six suggestions met the criteria for implementation, 20 did not meet the criteria, and 34 required further discussion with the research team. CONCLUSIONS Results from this study illustrate that people's lived experiences can drive their reactions and interpretations to demographic questionnaires. Based on end-user suggestions, SSBC made changes to its demographic questionnaire to be more inclusive. Having a demographic questionnaire that is more inclusive can help SSBC better understand what populations it is and is not reaching in an acceptable and inclusive manner. This will help inform future directions regarding evaluating program reach and equity.
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Affiliation(s)
- Sarah A Craven
- School of Health and Exercise Sciences, University of British Columbia, Okanagan Campus, Kelowna, BC, Canada
| | - Jenna A P Sim
- School of Health and Exercise Sciences, University of British Columbia, Okanagan Campus, Kelowna, BC, Canada
| | - Kaela D Cranston
- School of Health and Exercise Sciences, University of British Columbia, Okanagan Campus, Kelowna, BC, Canada
| | - Mary E Jung
- School of Health and Exercise Sciences, University of British Columbia, Okanagan Campus, Kelowna, BC, Canada
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Clark N, Quan C, Elgharbawy H, David A, Li ME, Mah C, Murphy JK, Costigan CL, Ganesan S, Guzder J. Why Collect and Use Race/Ethnicity Data? A Qualitative Case Study on the Perspectives of Mental Health Providers and Patients During COVID-19. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2024; 21:1499. [PMID: 39595766 PMCID: PMC11593584 DOI: 10.3390/ijerph21111499] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/21/2024] [Revised: 11/06/2024] [Accepted: 11/09/2024] [Indexed: 11/28/2024]
Abstract
CONTEXT Calls to collect patients' race/ethnicity (RE) data as a measure to promote equitable health care among vulnerable patient groups are increasing. The COVID-19 pandemic has highlighted how a public health crisis disproportionately affects racialized patient groups. However, less is known about the uptake of RE data collection in the context of mental health care services. METHODOLOGY A qualitative case study used surveys with mental health patients (n = 47) and providers (n = 12), a retrospective chart review, and a focus group to explore healthcare providers' and patients' perspectives on collecting RE data in Canada. RESULTS The patient survey data and focus groups show that patients avoid providing identifying information due to perceived stigma and discrimination and a lack of trust. Providers did not feel comfortable asking patients about RE, leading to chart review data where RE information was not systematically collected. CONCLUSIONS The uptake and implementation of RE data collection in mental health care contexts require increased training and support, systematic implementation, and further evaluation and measurement of how the collection of RE data will be used to mitigate systemic racism and improve mental health outcomes.
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Affiliation(s)
- Nancy Clark
- Department of Nursing, Faculty of Health, University of Victoria, Victoria, BC V8P 5C2, Canada
| | - Cindy Quan
- British Columbia Operational Stress Injury Clinic, Vancouver Coastal Health, Vancouver, BC V5M 4T5, Canada;
| | - Heba Elgharbawy
- Department of Psychology, University of Victoria, Victoria, BC V8P 5C2, Canada; (H.E.); (C.L.C.)
| | - Anita David
- BC Mental Health and Substance Use Services, Mental Health Commission of Canada, Vancouver, BC V6J 3M8, Canada;
| | - Michael E. Li
- Data & Analytics, Vancouver Coastal Health, Vancouver General Hospital, Vancouver, BC V5Z 1M9, Canada; (M.E.L.)
- Institute of Health Policy and Management Evaluation, University of Toronto, Toronto, ON M5S 1A1, Canada
| | - Christopher Mah
- Data & Analytics, Vancouver Coastal Health, Vancouver General Hospital, Vancouver, BC V5Z 1M9, Canada; (M.E.L.)
| | - Jill K. Murphy
- Interdisciplinary Health Program, St. Francis Xavier University, Antigonish, NS B2G 2W5, Canada;
| | - Catherine L. Costigan
- Department of Psychology, University of Victoria, Victoria, BC V8P 5C2, Canada; (H.E.); (C.L.C.)
| | - Soma Ganesan
- Department of Psychiatry, Faculty of Medicine, UBC Vancouver Campus, Vancouver, BC V6T 2A1, Canada; (S.G.); (J.G.)
| | - Jaswant Guzder
- Department of Psychiatry, Faculty of Medicine, UBC Vancouver Campus, Vancouver, BC V6T 2A1, Canada; (S.G.); (J.G.)
- Departments of Child Psychiatry & Social and Cultural Psychiatry, McGill University, Montreal, QC H3A 0G4, Canada
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Komeiha M, Kujbida G, Reynolds A, Mbagwu I, Dojeiji L, O'Rourke JJ, Raju S, Varia M, Stylianou H, Burgess S, Ogundele OJ, Pinto AD. A study of the enablers and barriers to the collection of sociodemographic data by public health units in Ontario, Canada during the COVID-19 pandemic. BMC Public Health 2024; 24:3061. [PMID: 39506709 PMCID: PMC11539653 DOI: 10.1186/s12889-024-20519-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/11/2023] [Accepted: 10/24/2024] [Indexed: 11/08/2024] Open
Abstract
BACKGROUND Collection and use of sociodemographic data (SDD), including race, ethnicity and income, are foundational to understanding health inequities. Ontario's public health units collected SDD as part of COVID-19 case management and vaccination activities. This research aimed to identify enablers and barriers to collecting SDD during COVID-19 case management and vaccination. METHODS As part of a larger mixed-method research study [1], qualitative methods were used to identify enablers and barriers to SDD collection during the COVID-19 pandemic. Purposive sampling was used to recruit participants from Ontario's 34 public health units. Sixteen focus groups and eight interviews were conducted virtually using Zoom. Interview data were transcribed and analyzed using inductive and deductive qualitative description. RESULTS SDD collection enablers included: legally mandating SDD collection and having dedicated data systems, technological and legal supports, senior management championing SDD collection, establishing rapport and trust between staff and clients, and gaining insight from the experiences from local communities and other jurisdictions. Identified barriers to SDD collection included: provincial data systems being perceived as lacking user-friendliness, SDD collection "was not a priority," time and other constraints on building staff and client rapport, and perceived discomfort with asking and answering personal SDD questions. CONCLUSION A combination of provincial and local organizational strategies including supportive data systems, training, and frameworks for data collection and use, are needed to normalize and scale up SDD collection by local health units beyond the context of the COVID-19 pandemic.
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Affiliation(s)
- Menna Komeiha
- Upstream Lab, MAP Centre for Urban Health Solutions, St. Michael's Hospital, Toronto, ON, Canada
| | | | | | | | | | - Joseph J O'Rourke
- Upstream Lab, MAP Centre for Urban Health Solutions, St. Michael's Hospital, Toronto, ON, Canada
| | | | | | | | | | - Oluwasegun Jko Ogundele
- Upstream Lab, MAP Centre for Urban Health Solutions, St. Michael's Hospital, Toronto, ON, Canada
| | - Andrew D Pinto
- Upstream Lab, MAP Centre for Urban Health Solutions, St. Michael's Hospital, Toronto, ON, Canada.
- Department of Family and Community Medicine, St. Michael's Hospital, Toronto, ON, Canada.
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
- Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
- Upstream Lab, Li Ka Shing Knowledge Institute, MAP Centre for Urban Health Solutions, Unity Health Toronto, 30 Bond Street, Toronto, ON, M5B 1W8, Canada.
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10
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Hernandez Alvarez A, Foppiani J, Foster L, Kim EJ, Schuster K, Lee D, Escobar-Domingo MJ, Taritsa I, Lin SJ, Lee BT. Association of Race and Postoperative Outcomes in Ventral Hernia Repair With Component Separation. J Surg Res 2024; 303:63-70. [PMID: 39298940 DOI: 10.1016/j.jss.2024.08.019] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/24/2024] [Revised: 07/23/2024] [Accepted: 08/16/2024] [Indexed: 09/22/2024]
Abstract
INTRODUCTION Hernia repairs are the most common surgical procedures in the United States, with a significant financial burden primarily attributed to emergent presentations and postsurgery complications. This study aimed to examine race differences on postoperative outcomes. METHODS American College of Surgeons National Surgical Quality Improvement Program database was queried to identify ventral hernia repair (VHR) cases from 2016 to 2021, with a subgroup of patients undergoing component separation (CS). Statistical analysis utilized multinomial regression to compare outcomes across racial groups, generating weighted cohorts with balanced covariates to assess differences between groups. RESULTS 288,515 patients were initially identified. Of these, 120,017 underwent VHR and 8732 VHR with CS. After weighting for the different groups, there were no differences in demographics or comorbidities between the racial groups for both cohorts. When evaluating postoperative complications after VHR, others (American Indian or Alaskan Native, Asian, Native Hawaiian, or Pacific Islander) had the highest rate of organ or space surgical site infection (SSI) (P < 0.001). Hospitalization >30 d was the lowest in Whites (0%), compared to Blacks (1%, P = 0.003) and others (1%, P < 0.001). For patients in the VHR with CS group, significant differences were noted in organ or space SSI (others 8%, P = 0.005), return to the operating room (others 13%, P = 0.015), hospitalizations >30 d (others 4% P = 0.002), and total LOS (others 5 [IQR 3,8], P = 0.004). CONCLUSIONS Despite advancements in surgical techniques, racial differences in VHR outcomes persist. These include higher rates of complications such as SSIs, higher rates of return to the operating room, and extended hospital stays among racial groups.
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Affiliation(s)
- Angelica Hernandez Alvarez
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Jose Foppiani
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Lacey Foster
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Erin J Kim
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Kirsten Schuster
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Daniela Lee
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Maria J Escobar-Domingo
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Iulianna Taritsa
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Samuel J Lin
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts
| | - Bernard T Lee
- Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts.
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11
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Mishra V, Blasi DE, Dexter JP. Bridging Ethics and Evidence: Language as a Critical Determinant of Health Equity. THE AMERICAN JOURNAL OF BIOETHICS : AJOB 2024; 24:66-69. [PMID: 39401726 DOI: 10.1080/15265161.2024.2402179] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/24/2024]
Affiliation(s)
| | - Damián E Blasi
- Catalan Institute for Advanced Study
- Pompeu Fabra University
| | - Joseph P Dexter
- University of Macau
- Northeastern University
- Harvard University
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12
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Uduwana SR, Nemerofsky SL. Recent G6PD Screening Mandate: We Are Missing the Mark. Hosp Pediatr 2024; 14:e369-e371. [PMID: 39028300 DOI: 10.1542/hpeds.2023-007681] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/05/2023] [Revised: 03/29/2024] [Accepted: 04/10/2024] [Indexed: 07/20/2024]
Affiliation(s)
- Shanika R Uduwana
- Stamford Health, Stamford, Connecticut
- Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
| | - Sheri L Nemerofsky
- Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
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13
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Gonzalez CJ, Krishnamurthy S, Rollin FG, Siddiqui S, Henry TL, Kiefer M, Wan S, Weerahandi H. Incorporating Anti-racist Principles Throughout the Research Lifecycle: A Position Statement from the Society of General Internal Medicine (SGIM). J Gen Intern Med 2024; 39:1922-1931. [PMID: 38743167 PMCID: PMC11282034 DOI: 10.1007/s11606-024-08770-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/22/2023] [Accepted: 04/12/2024] [Indexed: 05/16/2024]
Abstract
Biomedical research has advanced medicine but also contributed to widening racial and ethnic health inequities. Despite a growing acknowledgment of the need to incorporate anti-racist objectives into research, there remains a need for practical guidance for recognizing and addressing the influence of ingrained practices perpetuating racial harms, particularly for general internists. Through a review of the literature, and informed by the Research Lifecycle Framework, this position statement from the Society of General Internal Medicine presents a conceptual framework suggesting multi-level systemic changes and strategies for researchers to incorporate an anti-racist perspective throughout the research lifecycle. It begins with a clear assertion that race and ethnicity are socio-political constructs that have important consequences on health and health disparities through various forms of racism. Recommendations include leveraging a comprehensive approach to integrate anti-racist principles and acknowledging that racism, not race, drives health inequities. Individual researchers must acknowledge systemic racism's impact on health, engage in self-education to mitigate biases, hire diverse teams, and include historically excluded communities in research. Institutions must provide clear guidelines on the use of race and ethnicity in research, reject stigmatizing language, and invest in systemic commitments to diversity, equity, and anti-racism. National organizations must call for race-conscious research standards and training, and create measures to ensure accountability, establishing standards for race-conscious research for research funding. This position statement emphasizes our collective responsibility to combat systemic racism in research, and urges a transformative shift toward anti-racist practices throughout the research cycle.
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Affiliation(s)
- Christopher J Gonzalez
- Division of General Internal Medicine, Department of Medicine, Weill Cornell Medicine, New York, NY, USA.
| | - Sudarshan Krishnamurthy
- Department of Internal Medicine, Wake Forest University School of Medicine, Winston-Salem, NC, USA
| | - Francois G Rollin
- Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA
| | - Sarah Siddiqui
- Division of General Medicine, Department of Internal Medicine, University of Texas Medical Branch, Galveston, TX, USA
| | - Tracey L Henry
- Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA
| | - Meghan Kiefer
- Division of General Internal Medicine, University of Washington School of Medicine, Seattle, WA, USA
| | - Shaowei Wan
- Division of General Internal Medicine, University of Colorado School of Medicine, Aurora, CO, USA
| | - Himali Weerahandi
- Division of Hospital Medicine, Department of Medicine, University of California San Francisco, San Francisco, CA, USA
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14
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Rabay CJ, Lopez C, Streuli S, Mayes EC, Rajagopalan RM, Non AL. Clinicians' perspectives on race-specific guidelines for hypertensive treatment. Soc Sci Med 2024; 351:116938. [PMID: 38735272 DOI: 10.1016/j.socscimed.2024.116938] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/15/2023] [Revised: 04/08/2024] [Accepted: 04/30/2024] [Indexed: 05/14/2024]
Abstract
Despite the general consensus that there is no biological basis to race, racial categorization is still used by clinicians to guide diagnosis and treatment plans for certain diseases. In medicine, race is commonly used as a rough proxy for unmeasured social, environmental, and genetic factors. The American College of Cardiology's Eighth Joint National Committee's (JNC 8) guidelines for the treatment of hypertension provide race-specific medication recommendations for Black versus non-Black patients, without strong evidence for race-specific physiological differences in drug response. Clinicians practicing family or geriatric medicine (n = 21) were shown a video of a mock hypertensive patient with genetic ancestry test results that could be viewed as discordant with their phenotype and self-identified race. After viewing the videos, we conducted in-depth interviews to examine how clinicians value and prioritize different cues about race -- namely genetic ancestry data, phenotypic appearance, and self-identified racial classifications - when making treatment decisions in the context of race-specific guidelines, particularly in situations when patients claim mixed-race or complex racial identities. Results indicate that clinicians inconsistently follow the race-specific guidelines for patients whose genetic ancestry test results do not match neatly with their self-identified race or phenotypic features. However, many clinicians also emphasized the importance of clinical experience, side effects, and other factors in their decision making. Clinicians' definitions of race, categorization of the patient's race, and prioritization of racial cues greatly varied. The existence of the race-specific guidelines clearly influences treatment decisions, even as clinicians' express uncertainty about how to incorporate consideration of a patient's genetic ancestry. In light of widespread debate about removal of race from medical diagnostics, researchers should revisit the clinical justification for maintaining these race-specific guidelines. Based on our findings and prior studies indicating a lack of convincing evidence for biological differences by race in medication response, we suggest removing race from the JNC 8 guidelines to avoid risk of perpetuating or exacerbating health disparities in hypertension.
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Affiliation(s)
- Chantal J Rabay
- Department of Anthropology, University of California San Diego, 9500 Gilman Drive, La Jolla, CA, 92093, USA
| | - Carolina Lopez
- Department of Anthropology, University of California San Diego, 9500 Gilman Drive, La Jolla, CA, 92093, USA
| | - Samantha Streuli
- Department of Anthropology, University of California San Diego, 9500 Gilman Drive, La Jolla, CA, 92093, USA; National Environmental Health Association, 720 S. Colorado Blvd. Suite 105A, Denver, CO, 80246-1910, USA
| | - E Carolina Mayes
- Department of Sociology, University of California, San Diego. 9500 Gilman Drive, La Jolla, CA, 92093, USA; Department of Science, Technology and Innovation Studies, School of Social and Political Science, University of Edinburgh. 2.05 Old Surgeons' Hall, High School Yards, Edinburgh, EH1 1LZ, GB, UK
| | - Ramya M Rajagopalan
- Wertheim School of Public Health and Human Longevity Science, 9500 Gilman Drive, La Jolla, CA, 92093, USA; Center for Empathy and Technology, Sanford Institute for Empathy and Compassion, 9500 Gilman Drive, La Jolla, CA, 92093, USA
| | - Amy L Non
- Department of Anthropology, University of California San Diego, 9500 Gilman Drive, La Jolla, CA, 92093, USA.
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15
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Hussain C, Podewils LJ, Wittmer N, Boyer A, Marin MC, Hanratty RL, Hasnain-Wynia R. Leveraging Ethnic Backgrounds to Improve Collection of Race, Ethnicity, and Language Data. J Healthc Qual 2024; 46:160-167. [PMID: 38387020 DOI: 10.1097/jhq.0000000000000425] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/24/2024]
Abstract
INTRODUCTION Healthcare disparities may be exacerbated by upstream incapacity to collect high-quality and accurate race, ethnicity, and language (REaL) data. There are opportunities to remedy these data barriers. We present the Denver Health (DH) REaL initiative, which was implemented in 2021. METHODS Denver Health is a large safety net health system. After assessing the state of REaL data at DH, we developed a standard script, implemented training, and adapted our electronic health record to collect this information starting with an individual's ethnic background followed by questions on race, ethnicity, and preferred language. We analyzed the data for completeness after REaL implementation. RESULTS A total of 207,490 patients who had at least one in-person registration encounter before and after the DH REaL implementation were included in our analysis. There was a significant decline in missing values for race (7.9%-0.5%, p < .001) and for ethnicity (7.6%-0.3%, p < .001) after implementation. Completely of language data also improved (3%-1.6%, p < .001). A year after our implementation, we knew over 99% of our cohort's self-identified race and ethnicity. CONCLUSIONS Our initiative significantly reduced missing data by successfully leveraging ethnic background as the starting point of our REaL data collection.
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16
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Batista R, Hsu AT, Bouchard L, Reaume M, Rhodes E, Sucha E, Guerin E, Prud'homme D, Manuel DG, Tanuseputro P. Ascertaining the Francophone population in Ontario: validating the language variable in health data. BMC Med Res Methodol 2024; 24:98. [PMID: 38678174 PMCID: PMC11055282 DOI: 10.1186/s12874-024-02220-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/11/2023] [Accepted: 04/15/2024] [Indexed: 04/29/2024] Open
Abstract
BACKGROUND Language barriers can impact health care and outcomes. Valid and reliable language data is central to studying health inequalities in linguistic minorities. In Canada, language variables are available in administrative health databases; however, the validity of these variables has not been studied. This study assessed concordance between language variables from administrative health databases and language variables from the Canadian Community Health Survey (CCHS) to identify Francophones in Ontario. METHODS An Ontario combined sample of CCHS cycles from 2000 to 2012 (from participants who consented to link their data) was individually linked to three administrative databases (home care, long-term care [LTC], and mental health admissions). In total, 27,111 respondents had at least one encounter in one of the three databases. Language spoken at home (LOSH) and first official language spoken (FOLS) from CCHS were used as reference standards to assess their concordance with the language variables in administrative health databases, using the Cohen kappa, sensitivity, specificity, positive predictive value (PPV), and negative predictive values (NPV). RESULTS Language variables from home care and LTC databases had the highest agreement with LOSH (kappa = 0.76 [95%CI, 0.735-0.793] and 0.75 [95%CI, 0.70-0.80], respectively) and FOLS (kappa = 0.66 for both). Sensitivity was higher with LOSH as the reference standard (75.5% [95%CI, 71.6-79.0] and 74.2% [95%CI, 67.3-80.1] for home care and LTC, respectively). With FOLS as the reference standard, the language variables in both data sources had modest sensitivity (53.1% [95%CI, 49.8-56.4] and 54.1% [95%CI, 48.3-59.7] in home care and LTC, respectively) but very high specificity (99.8% [95%CI, 99.7-99.9] and 99.6% [95%CI, 99.4-99.8]) and predictive values. The language variable from mental health admissions had poor agreement with all language variables in the CCHS. CONCLUSIONS Language variables in home care and LTC health databases were most consistent with the language often spoken at home. Studies using language variables from administrative data can use the sensitivity and specificity reported from this study to gauge the level of mis-ascertainment error and the resulting bias.
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Affiliation(s)
- Ricardo Batista
- Institut du Savoir Montfort, Ottawa, ON, Canada.
- ICES uOttawa, Ottawa, ON, Canada.
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
- Institut du Savoir Montfort, ICES and Ottawa Hospital Research Institute, 1053 Carling Ave Box 693, 2-006 Admin Services Building, Ottawa, ON, K1Y 4E9, Canada.
| | - Amy T Hsu
- ICES uOttawa, Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada
- Elizabeth Bruyère Research Institute, Ottawa, ON, Canada
| | - Louise Bouchard
- Institut du Savoir Montfort, Ottawa, ON, Canada
- School of Social and Anthropological Studies, University of Ottawa, Ottawa, ON, Canada
| | | | - Emily Rhodes
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada
| | | | - Eva Guerin
- Institut du Savoir Montfort, Ottawa, ON, Canada
| | - Denis Prud'homme
- Institut du Savoir Montfort, Ottawa, ON, Canada
- Université de Moncton, Moncton, New Brunswick, Canada
| | - Douglas G Manuel
- ICES uOttawa, Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada
- Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada
- Statistics Canada, Ottawa, ON, Canada
| | - Peter Tanuseputro
- ICES uOttawa, Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada
- Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada
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17
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Madbouly A, Bolon YT. Race, ethnicity, ancestry, and aspects that impact HLA data and matching for transplant. Front Genet 2024; 15:1375352. [PMID: 38560292 PMCID: PMC10978785 DOI: 10.3389/fgene.2024.1375352] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/23/2024] [Accepted: 02/29/2024] [Indexed: 04/04/2024] Open
Abstract
Race, ethnicity, and ancestry are terms that are often misinterpreted and/or used interchangeably. There is lack of consensus in the scientific literature on the definition of these terms and insufficient guidelines on the proper classification, collection, and application of this data in the scientific community. However, defining groups for human populations is crucial for multiple healthcare applications and clinical research. Some examples impacted by population classification include HLA matching for stem-cell or solid organ transplant, identifying disease associations and/or adverse drug reactions, defining social determinants of health, understanding diverse representation in research studies, and identifying potential biases. This article describes aspects of race, ethnicity and ancestry information that impact the stem-cell or solid organ transplantation field with particular focus on HLA data collected from donors and recipients by donor registries or transplant centers.
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Affiliation(s)
- Abeer Madbouly
- Center for International Blood and Marrow Transplant Research (CIBMTR), Minneapolis, MN, United States
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18
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Arora A, Alderman JE, Palmer J, Ganapathi S, Laws E, McCradden MD, Oakden-Rayner L, Pfohl SR, Ghassemi M, McKay F, Treanor D, Rostamzadeh N, Mateen B, Gath J, Adebajo AO, Kuku S, Matin R, Heller K, Sapey E, Sebire NJ, Cole-Lewis H, Calvert M, Denniston A, Liu X. The value of standards for health datasets in artificial intelligence-based applications. Nat Med 2023; 29:2929-2938. [PMID: 37884627 PMCID: PMC10667100 DOI: 10.1038/s41591-023-02608-w] [Citation(s) in RCA: 67] [Impact Index Per Article: 33.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/14/2023] [Accepted: 09/22/2023] [Indexed: 10/28/2023]
Abstract
Artificial intelligence as a medical device is increasingly being applied to healthcare for diagnosis, risk stratification and resource allocation. However, a growing body of evidence has highlighted the risk of algorithmic bias, which may perpetuate existing health inequity. This problem arises in part because of systemic inequalities in dataset curation, unequal opportunity to participate in research and inequalities of access. This study aims to explore existing standards, frameworks and best practices for ensuring adequate data diversity in health datasets. Exploring the body of existing literature and expert views is an important step towards the development of consensus-based guidelines. The study comprises two parts: a systematic review of existing standards, frameworks and best practices for healthcare datasets; and a survey and thematic analysis of stakeholder views of bias, health equity and best practices for artificial intelligence as a medical device. We found that the need for dataset diversity was well described in literature, and experts generally favored the development of a robust set of guidelines, but there were mixed views about how these could be implemented practically. The outputs of this study will be used to inform the development of standards for transparency of data diversity in health datasets (the STANDING Together initiative).
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Affiliation(s)
- Anmol Arora
- School of Clinical Medicine, University of Cambridge, Cambridge, UK
| | - Joseph E Alderman
- Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
- University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK
| | - Joanne Palmer
- University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK
| | | | - Elinor Laws
- Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
- University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK
| | - Melissa D McCradden
- Department of Bioethics, The Hospital for Sick Children, Toronto, Ontario, Canada
- Genetics and Genome Biology, Peter Gilgan Centre for Research and Learning, Toronto, Ontario, Canada
- Dalla Lana School of Public Health, Toronto, Ontario, Canada
| | - Lauren Oakden-Rayner
- The Australian Institute for Machine Learning, University of Adelaide, Adelaide, South Australia, Australia
| | | | - Marzyeh Ghassemi
- Department of Electrical Engineering and Computer Science, Massachusetts Institute of Technology, Cambridge, MA, USA
- Institute for Medical Engineering & Science, Massachusetts Institute of Technology, Cambridge, MA, USA
- Vector Institute, Toronto, Ontario, Canada
| | - Francis McKay
- The Ethox Centre and the Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford, Oxford, UK
| | - Darren Treanor
- Leeds Teaching Hospitals NHS Trust, Leeds, UK
- University of Leeds, Leeds, UK
- Department of Clinical Pathology and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden
- Center for Medical Image Science and Visualization, Linköping University, Linköping, Sweden
| | | | - Bilal Mateen
- Institute for Health Informatics, University College London, London, UK
- Wellcome Trust, London, UK
| | - Jacqui Gath
- Patient and Public Involvement and Engagement (PPIE) Group, STANDING Together, Birmingham, UK
| | - Adewole O Adebajo
- Patient and Public Involvement and Engagement (PPIE) Group, STANDING Together, Birmingham, UK
| | | | - Rubeta Matin
- Oxford University Hospitals NHS Foundation Trust, Oxford, UK
| | | | - Elizabeth Sapey
- Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
- University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK
- PIONEER, HDR UK Hub in Acute Care, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK
| | - Neil J Sebire
- National Institute for Health and Care Research, Great Ormond Street Hospital Biomedical Research Centre, London, UK
- Great Ormond Street Institute of Child Health, University Hospital London, London, UK
| | | | - Melanie Calvert
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK
- Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK
- Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
- National Institute for Health and Care Research Applied Research Collaboration West Midlands, University of Birmingham, Birmingham, UK
- National Institute for Health and Care Research Birmingham-Oxford Blood and Transplant Research Unit in Precision Transplant and Cellular Therapeutics, University of Birmingham, Birmingham, UK
- DEMAND Hub, University of Birmingham, Birmingham, UK
- UK SPINE, University of Birmingham, Birmingham, UK
| | - Alastair Denniston
- Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
- University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK
- Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK
- National Institute for Health and Care Research Biomedical Research Centre, Moorfields Eye Hospital/University College London, London, UK
| | - Xiaoxuan Liu
- Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
- University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
- National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK.
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Proumen R, Connolly H, Debick NA, Hopkins R. Assessing the accuracy of electronic health record gender identity and REaL data at an academic medical center. BMC Health Serv Res 2023; 23:884. [PMID: 37608282 PMCID: PMC10463428 DOI: 10.1186/s12913-023-09825-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2023] [Accepted: 07/17/2023] [Indexed: 08/24/2023] Open
Abstract
BACKGROUND Collection of accurate patient race, ethnicity, preferred language (REaL) and gender identity in the electronic health record (EHR) is essential for equitable and inclusive care. Misidentification of these factors limits quality measurement of health outcomes in at-risk populations. Therefore, the aim of our study was to assess the accuracy of REaL and gender identity data at our institution. METHODS A survey was administered to 117 random patients, selected from prior day admissions at a large academic medical center in urban central New York. Patients (or guardians) self-reported REaL and gender identity data, selecting from current EHR options. Variables were coded for the presence or absence of a difference from data recorded in the EHR. RESULTS Race was misreported in the EHR for 13% of patients and ethnicity for 6%. For most White and Black patients, race was concordant. However, self-identified data for all multiracial patients were discordant with the EHR. Most Non-Hispanic patients had ethnicity correctly documented. Some Hispanic patients were misidentified. There was a significant association between reporting both a race and an ethnicity which differed from the EHR on chi square analysis (P < 0.001). Of those who reported an alternative ethnicity, 71.4% also reported an alternative race. Gender identity was missing for most patients and 11% of the gender-identity entries present in the EHR were discordant with the patient's self-identity. Preferred language was 100% concordant with the EHR. CONCLUSIONS At an academic medical center, multiracial and Hispanic patients were more likely to have their demographics misreported in the EHR, and gender identity data were largely missing. Healthcare systems need strategies that support accurate collection of patients' self-reported ReAL and gender identity data to improve the future ability to identify and address healthcare disparities.
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Affiliation(s)
- Rachael Proumen
- Department of Medicine, State University of New York (SUNY) Upstate Medical University, 750 E. Adams St, Syracuse, New York, USA.
- State University of New York (SUNY) Upstate Medical University Norton College of Medicine, Syracuse, New York, USA.
| | - Hannah Connolly
- State University of New York (SUNY) Upstate Medical University Norton College of Medicine, Syracuse, New York, USA
| | - Nadia Alexandra Debick
- State University of New York (SUNY) Upstate Medical University Norton College of Medicine, Syracuse, New York, USA
| | - Rachel Hopkins
- Department of Medicine, State University of New York (SUNY) Upstate Medical University, 750 E. Adams St, Syracuse, New York, USA
- Department of Medicine, Division of Endocrinology, State University of New York (SUNY) Upstate Medical University, 750 E Adams St., Syracuse, NY, 13210, USA
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20
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Velarde G, Bravo‐Jaimes K, Brandt EJ, Wang D, Douglass P, Castellanos LR, Rodriguez F, Palaniappan L, Ibebuogu U, Bond R, Ferdinand K, Lundberg G, Thamman R, Vijayaraghavan K, Watson K. Locking the Revolving Door: Racial Disparities in Cardiovascular Disease. J Am Heart Assoc 2023; 12:e025271. [PMID: 36942617 PMCID: PMC10227271 DOI: 10.1161/jaha.122.025271] [Citation(s) in RCA: 15] [Impact Index Per Article: 7.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 03/23/2023]
Abstract
Racial disparities in cardiovascular disease are unjust, systematic, and preventable. Social determinants are a primary cause of health disparities, and these include factors such as structural and overt racism. Despite a number of efforts implemented over the past several decades, disparities in cardiovascular disease care and outcomes persist, pervading more the outpatient rather than the inpatient setting, thus putting racial and ethnic minority groups at risk for hospital readmissions. In this article, we discuss differences in care and outcomes of racial and ethnic minority groups in both of these settings through a review of registries. Furthermore, we explore potential factors that connote a revolving door phenomenon for those whose adverse outpatient environment puts them at risk for hospital readmissions. Additionally, we review promising strategies, as well as actionable items at the policy, clinical, and educational levels aimed at locking this revolving door.
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Affiliation(s)
- Gladys Velarde
- Department of CardiologyUniversity of FloridaJacksonvilleFL
| | | | | | - Daniel Wang
- Division of CardiologyUniversity of CaliforniaLos AngelesCA
| | - Paul Douglass
- Division of CardiologyWellstar Atlanta Medical CenterAtlantaGA
| | | | - Fatima Rodriguez
- Division of Cardiology and the Cardiovascular InstituteStanford University School of MedicinePalo AltoCA
| | | | - Uzoma Ibebuogu
- Division of CardiologyUniversity of Tennessee Health Science CenterMemphisTN
| | - Rachel Bond
- Division of CardiologyDignity HealthGilbertAZ
- Division Cardiology, Department of Internal MedicineCreighton University School of MedicineOmahaNE
| | - Keith Ferdinand
- Division of CardiologyTulane School of MedicineNew OrleansLA
| | | | - Ritu Thamman
- Division of CardiologyUniversity of PittsburghPittsburghPA
| | | | - Karol Watson
- Division of CardiologyUniversity of CaliforniaLos AngelesCA
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21
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Rosales R, León IA, León-Fuentes AL. Recommendations for Recruitment and Retention of a Diverse Workforce: A Report from the Field. Behav Anal Pract 2023; 16:346-361. [PMID: 36212634 PMCID: PMC9524305 DOI: 10.1007/s40617-022-00747-z] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 08/26/2022] [Indexed: 11/17/2022] Open
Abstract
There has been increased interest and attention to the need for equity, diversity, and inclusion, in the field of applied behavior analysis in recent years. Several publications have focused on these topics and educational curricula and professional development opportunities have been developed. One aspect that has received less attention is how companies providing behavior analytic services can help to promote and sustain a diverse workforce. The purpose of this article is to provide examples and recommendations for how these overarching goals can be addressed. The examples and recommendations are described in the context of a small company that has made important strides in addressing this topic through its mission to serve members of marginalized communities.
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Affiliation(s)
- Rocío Rosales
- Department of Psychology, University of Massachusetts Lowell, 850 Broadway St, Lowell, MA 01854 USA
| | - Isabel A. León
- Applied Behavior Analysis: Training, Education, and Consultation, Mattapan, MA USA
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22
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Khalili E, Molavynejad S, Adineh M, Haghighizadeh MH. The Effect of Thai Massage on the Severity of Pain in Patients with Unstable Angina: A Randomized Controlled Clinical Trial. J Caring Sci 2023; 12:73-78. [PMID: 37124410 PMCID: PMC10131166 DOI: 10.34172/jcs.2023.30150] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/10/2021] [Accepted: 08/10/2021] [Indexed: 05/02/2023] Open
Abstract
Introduction: Chest pain is an unpleasant and the most common symptom in patients suffering from unstable angina. This study was implemented to investigate the effect of Thai massage on severity of pain in patients with unstable angina. Methods: This study was a randomized controlled clinical trial that carried out on 70 patients with unstable angina who had been hospitalized in hospital affiliated to Ahvaz Jundishapur University of Medical sciences, Ahvaz, Iran. The participants were allocated randomly to either the intervention (n=35) or control group (n=35) between August 1, 2016 and April 30, 2017. The patients in the intervention group received routine care beside and Thai massage with the duration of 30 minutes in two consecutive days. The patients in the control group received routine care. The intensity of pain was assessed by using the numeric rating scale, five minutes before and immediately, 15, 30 and 60 minutes after the intervention. The independent t-test and repeated measures analysis of variance (ANOVA) were used to analysis data through SPSS 13. Results: After the intervention, the severity of pain was significantly diminished by about four measurement points (P=0.001) with the linear pattern of pain reduction. Nonetheless, in the control group, no statistically significant difference in the intensity of pain was found. Conclusion: This study showed that Thai massage as non-invasive approach, concomitant with standard nursing care, has the potential to decrease chest pain. Nurses should be taught about pain relief methods for improving the quality of patient care.
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Affiliation(s)
- Elahe Khalili
- Nursing Care Research Center in Chronic Diseases, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
| | - Shahram Molavynejad
- Nursing Care Research Center in Chronic Diseases, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
- *Corresponding Author: Shahram Molavynejad,
| | - Mohammad Adineh
- Nursing Care Research Center in Chronic Diseases, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
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Ansari B, Hart-Malloy R, Rosenberg ES, Trigg M, Martin EG. Modeling the Potential Impact of Missing Race and Ethnicity Data in Infectious Disease Surveillance Systems on Disparity Measures: Scenario Analysis of Different Imputation Strategies. JMIR Public Health Surveill 2022; 8:e38037. [PMID: 36350701 PMCID: PMC9685511 DOI: 10.2196/38037] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/16/2022] [Revised: 08/03/2022] [Accepted: 09/29/2022] [Indexed: 01/04/2023] Open
Abstract
BACKGROUND Monitoring progress toward population health equity goals requires developing robust disparity indicators. However, surveillance data gaps that result in undercounting racial and ethnic minority groups might influence the observed disparity measures. OBJECTIVE This study aimed to assess the impact of missing race and ethnicity data in surveillance systems on disparity measures. METHODS We explored variations in missing race and ethnicity information in reported annual chlamydia and gonorrhea diagnoses in the United States from 2007 to 2018 by state, year, reported sex, and infection. For diagnoses with incomplete demographic information in 2018, we estimated disparity measures (relative rate ratio and rate difference) with 5 imputation scenarios compared with the base case (no adjustments). The 5 scenarios used the racial and ethnic distribution of chlamydia or gonorrhea diagnoses in the same state, chlamydia or gonorrhea diagnoses in neighboring states, chlamydia or gonorrhea diagnoses within the geographic region, HIV diagnoses, and syphilis diagnoses. RESULTS In 2018, a total of 31.93% (560,551/1,755,510) of chlamydia and 22.11% (128,790/582,475) of gonorrhea diagnoses had missing race and ethnicity information. Missingness differed by infection type but not by reported sex. Missing race and ethnicity information varied widely across states and times (range across state-years: from 0.0% to 96.2%). The rate ratio remained similar in the imputation scenarios, although the rate difference differed nationally and in some states. CONCLUSIONS We found that missing race and ethnicity information affects measured disparities, which is important to consider when interpreting disparity metrics. Addressing missing information in surveillance systems requires system-level solutions, such as collecting more complete laboratory data, improving the linkage of data systems, and designing more efficient data collection procedures. As a short-term solution, local public health agencies can adapt these imputation scenarios to their aggregate data to adjust surveillance data for use in population indicators of health equity.
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Affiliation(s)
- Bahareh Ansari
- Center for Policy Research, Rockefeller College of Public Affairs and Policy, University at Albany, Albany, NY, United States
- Center for Collaborative HIV Research in Practice and Policy, School of Public Health, University at Albany, Albany, NY, United States
| | - Rachel Hart-Malloy
- Center for Collaborative HIV Research in Practice and Policy, School of Public Health, University at Albany, Albany, NY, United States
- New York State Department of Health, Albany, NY, United States
- Department of Epidemiology and Biostatistics, School of Public Health, University at Albany, Albany, NY, United States
| | - Eli S Rosenberg
- Center for Collaborative HIV Research in Practice and Policy, School of Public Health, University at Albany, Albany, NY, United States
- New York State Department of Health, Albany, NY, United States
- Department of Epidemiology and Biostatistics, School of Public Health, University at Albany, Albany, NY, United States
| | - Monica Trigg
- Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, United States
| | - Erika G Martin
- Center for Collaborative HIV Research in Practice and Policy, School of Public Health, University at Albany, Albany, NY, United States
- Department of Public Administration and Policy, Rockefeller College of Public Affairs and Policy, University at Albany, Albany, NY, United States
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Screening for Social Risk Factors in the ICU During the Pandemic. Crit Care Explor 2022; 4:e0761. [PMID: 36196435 PMCID: PMC9524932 DOI: 10.1097/cce.0000000000000761] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022] Open
Abstract
UNLABELLED Due to limitations in data collected through electronic health records, the social risk factors (SRFs) that predate severe illness and restrict access to critical care services are poorly understood. OBJECTIVES This study explored the feasibility and utility of directly eliciting SRFs in the ICU by implementing a screening program. DESIGN SETTING AND PARTICIPANTS Five hundred sixty-six critically ill patients at the medical ICU of Robert Wood Johnson University Hospital from July 1, 2019, to September 31, 2021, were interviewed for SRFs using an adapted version of the American Academy of Family Physicians' Social Needs Screening Tool. MAIN OUTCOMES AND MEASURES For each SRFs, we compared basic demographic factors, proxies of socioeconomic status, and severity score between those with and without the SRFs through chi-square tests and Wilcoxon rank-sum tests. Furthermore, we determined the prevalence of SRFs overall, before, and during the COVID-19 pandemic. RESULTS Of critically ill patients, 39.58% reported at least one SRF. Age, zip-code matched median household income, and insurance type differed depending on the SRFs. Notably, patients with SRFs were admitted with a lower average severity score, indicating reduced risk in mortality. Since March 2020, the prevalence of SRFs in the ICU overall fell from 54.47% to 35.44%. Conversely, the proportion of patients unable to afford healthcare increased statistically significantly from 7.32% to 18.06%. CONCLUSIONS AND RELEVANCE Screening for SRFs in the ICU detected the presence of disproportionally low-risk patients whose access to critical care services became restricted throughout the pandemic.
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Navarro SM, Vakayil VR, Solaiman RH, Keil EJ, Cohen MW, Spartz EJ, Tignanelli CJ, Harmon JV. Risk of hospital admission related to scooter trauma injuries: a national emergency room database study. BMC Emerg Med 2022; 22:150. [PMID: 36050639 PMCID: PMC9438147 DOI: 10.1186/s12873-022-00711-8] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/13/2022] [Accepted: 08/24/2022] [Indexed: 11/21/2022] Open
Abstract
BACKGROUND We investigated key risk factors for hospital admission related to powered scooters, which are modes of transportation with increasing accessibility across the United States (US). METHODS We queried the National Electronic Injury Surveillance System (NEISS) for injuries related to powered scooters, obtaining US population projections of injuries and hospital admissions. We determined mechanism of injury, characterized injury types, and performed multivariate regression analyses to determine factors associated with hospital admission. RESULTS One thousand one hundred ninety-one patients sustained electric-motorized scooter (e-scooter) injuries and 10.9% (131) required hospitalization from 2013 to 2018. This extrapolated to a US annual total of 862 (95% CI:745-979) scooter injuries requiring hospitalization, with estimated annual mortality of 6.7 patients per year (95% CI:4.8-8.5). The incidence of hospital admissions increased by an average of 13.1% each year of the study period. Fall (79 [60%]) and motor vehicle collision (33 [25%]) were the most common mechanism. Injury locations included head (44 [34%]), lower extremity (22 [17%]), and lower trunk (16 [12%]). On multivariable analysis, significant factors associated with admission included increased age (OR 1.02, 95% CI:1.01-1.02), torso injuries (OR 6.19, 2.93-13.10), concussion (25.45, 5.88-110.18), fractures (21.98, 7.13-67.66), musculoskeletal injury (6.65, 1.20-36.99), and collision with vehicle (3.343, 2.009-5.562). Scooter speed, seasonality, and gender were not associated with risk of hospitalization. CONCLUSION Our findings show increased hospital admissions and mortality from powered scooter trauma, with fall and motor vehicle collisions as the most common mechanisms resulting in hospitalization. This calls for improved rider safety measures and regulation surrounding vehicular collision scenarios.
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Affiliation(s)
- Sergio M. Navarro
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
- Department of Orthopaedics Rheumatology and Musculoskeletal Sciences, University of Oxford Nuffield, Oxford, UK
| | - Victor R. Vakayil
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
| | - Rafat H. Solaiman
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
| | - Evan J. Keil
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
| | - Matthew W. Cohen
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
| | - Ellen J. Spartz
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
| | | | - James V. Harmon
- Department of Surgery, University of Minnesota, 420 Delaware St SE, Minneapolis, MN 55455 USA
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Limited English Proficiency and Clinical Outcomes After Hospital-Based Care in English-Speaking Countries: a Systematic Review. J Gen Intern Med 2022; 37:2050-2061. [PMID: 35112283 PMCID: PMC9198156 DOI: 10.1007/s11606-021-07348-6] [Citation(s) in RCA: 17] [Impact Index Per Article: 5.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/10/2021] [Accepted: 12/15/2021] [Indexed: 10/19/2022]
Abstract
BACKGROUND Limited English proficiency (LEP) is common among hospitalized patients and may impact care. We synthesized the literature comparing clinical outcomes after in-hospital care for English-proficient(EP) versus LEP patients. METHODS This systematic review searched PubMed, Embase, and Web of Science from database inception through June 7, 2020, to identify research investigating clinical outcomes in patients receiving hospital-based care (in the emergency department, inpatient ward, surgical/procedural suite, or intensive care unit) that compared patients with LEP to an EP group. We assessed mortality, length of stay (LOS), readmissions/revisits, and complications. Study quality was evaluated using the Newcastle-Ottawa Scale. RESULTS Twenty-six studies met eligibility criteria. Study settings and populations were heterogeneous. Determination of primary language varied; a majority of studies (16/26) used patient self-report directly or via hospital records. Of 16 studies examining LEP and all-cause mortality, 13 found no significant association. Of 17 studies measuring LOS, 9 found no difference, 4 found longer LOS, 3 found shorter LOS, and 1 had mixed LOS results among patients with LEP. Several investigations suggested that LOS differences may be mediated at the hospital level. Nine studies evaluated inpatient readmissions. Among patients with LEP, there was evidence for increased readmissions in the setting of chronic medical conditions such as heart failure, but no evidence for increased readmissions among cohorts undergoing surgeries/procedures or with acute medical conditions. Five studies evaluated complications or harm related to a hospitalization, and no differences were found between language groups. DISCUSSION The research community lacks a standardized definition of LEP. Most studies did not find an association between English proficiency and mortality or complications. LOS findings were mixed and may be influenced at the hospital level. Differences in readmissions by language were concentrated in chronic medical conditions. Given the paucity of studies examining LEP populations, additional research is imperative. PROSPERO REGISTRATION NUMBER CRD42020143477.
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Ravindra K, Del Buono MG, Chiabrando JG, Westman P, Bressi E, Kadariya D, Maehara C, Dell M, Ma L, VAN Wezenbeek J, Moeller FG, Keyser-Marcus L, Keen LD, Gal TS, Abbate A. Clinical features and outcomes between African American and Caucasian patients with Takotsubo Syndrome. Minerva Cardiol Angiol 2021; 69:750-759. [PMID: 33427424 PMCID: PMC8422028 DOI: 10.23736/s2724-5683.20.05456-0] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
BACKGROUND Takotsubo syndrome (TS) is an acute, reversible form of heart failure, often mimicking an acute coronary syndrome (ACS). Data regarding racial differences in TS are inconsistent. The aim is to assess clinical features associated with unfavorable in-hospital outcomes between African American (AA) and Caucasian (CAU) patients. METHODS A retrospective electronic health record query identified 44 AA patients and 110 CAU patients with a diagnosis of TS. Our primary outcome was a composite of death, stroke, and cardiogenic shock during hospitalization. Variables associated with an increased risk of the primary composite outcomes were included in a logistic regression model. RESULTS Compared to CAU patients, AA patients were a more comorbid population, and presented a higher prevalence of history of illicit drug use (27.3% vs. 13.6% P=0.044). There were no significant differences regarding in-hospital complication rates between AA and CAU patients. In the logistic regression model, infection was associated with greater risk of developing the primary outcome in AA patients (OR=7.26 [95% CI 1.22-43.17], P=0.029), whereas angina was a protective factor (OR=0.11 [95% CI 0.02-0.65], P=0.015). In CAU patients, severely depressed ejection fraction and worse peak creatinine during hospitalization increased risk of developing the primary outcome (OR=5.88 95% CI [2.01-17.17], P<0.001 and OR=1.64 [95% CI 1.15-2.58], P=0.031, respectively). Meanwhile, emotional stressors were protective (OR=0.16 [95% CI 0.03-0.88], P=0.004). CONCLUSIONS Despite experiencing the same rate of in-hospital complications, the clinical profiles of AA patients are distinct from CAU patients admitted for TS, and clinical variables correlated with worse in-hospital outcomes also differ by race.
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Affiliation(s)
- Krishna Ravindra
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Marco G Del Buono
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA -
- Department of Cardiovascular and Pulmonary Sciences, Sacred Heart Catholic University, Rome, Italy
| | - Juan G Chiabrando
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
- Interventional Cardiology Service, Italian Hospital of Buenos Aires, Buenos Aires, Argentina
- Laboratory of Applied Health Statistics (LEACS), School of Medicine, University of Buenos Aires, Buenos Aires, Argentina
| | - Peter Westman
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Edoardo Bressi
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Dinesh Kadariya
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Curtis Maehara
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Megan Dell
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Liangsuo Ma
- Department of Radiology, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Jessie VAN Wezenbeek
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - F Gerard Moeller
- Department of Psychiatry, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Lori Keyser-Marcus
- Department of Psychiatry, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Larry D Keen
- Department of Psychology, Virginia State University, Petersburg, VA, USA
| | - Tamas S Gal
- Department of Biostatistics, Virginia Commonwealth University Hospital, Richmond, VA, USA
| | - Antonio Abbate
- Pauley Heart Center, Virginia Commonwealth University Hospital, Richmond, VA, USA
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Wark K, Cheung K, Wolter E, Avey JP. "Engaging stakeholders in integrating social determinants of health into electronic health records: a scoping review". Int J Circumpolar Health 2021; 80:1943983. [PMID: 34252016 PMCID: PMC8276667 DOI: 10.1080/22423982.2021.1943983] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/03/2020] [Revised: 05/27/2021] [Accepted: 06/13/2021] [Indexed: 10/27/2022] Open
Abstract
Social, environmental, and behavioural factors impact human health. Integrating these social determinants of health (SDOH) into electronic health records (EHR) may improve individual and population health. But how these data are collectedand their use in clinical settings remain unclear. We reviewed efforts to integrate SDOH into EHR in the U.S. and Canada, especially how this implementation serves Indigenous peoples. We followed an established scoping review process, performing iterative keyword searches in subject-appropriate databases, reviewing identified works' bibliographies, and soliciting recommendations from subject-matter experts. We reviewed 20 articles from an initial set of 2,459. Most discussed multiple SDOH indicator standards, with the National Academy of Medicine's (NAM) the most frequently cited (n = 10). Common SDOH domains were demographics, economics, education, environment, housing, psychosocial factors, and health behaviours. Twelve articles discussed project acceptability and feasibility; eight mentioned stakeholder engagement (none specifically discussed engaging ethnic or social minorities); and six adapted SDOH measures to local cultures . Linking SDOH data to EHR as related to Indigenous communities warrants further exploration, especially how to best align cultural strengths and community expectations with clinical priorities. Integrating SDOH data into EHR appears feasible and acceptable may improve patient care, patient-provider relationships, and health outcomes.
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Affiliation(s)
- Kyle Wark
- Southcentral Foundation, Research Department, Anchorage, AK, USA
| | - Karen Cheung
- Southcentral Foundation, Research Department, Anchorage, AK, USA
| | - Erika Wolter
- Southcentral Foundation, Research Department, Anchorage, AK, USA
| | - Jaedon P. Avey
- Southcentral Foundation, Research Department, Anchorage, AK, USA
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Mehta HB, An H, Andersen KM, Mansour O, Madhira V, Rashidi ES, Bates B, Setoguchi S, Joseph C, Kocis PT, Moffitt R, Bennett TD, Chute CG, Garibaldi BT, Alexander GC. Use of Hydroxychloroquine, Remdesivir, and Dexamethasone Among Adults Hospitalized With COVID-19 in the United States : A Retrospective Cohort Study. Ann Intern Med 2021; 174:1395-1403. [PMID: 34399060 PMCID: PMC8372837 DOI: 10.7326/m21-0857] [Citation(s) in RCA: 27] [Impact Index Per Article: 6.8] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Relatively little is known about the use patterns of potential pharmacologic treatments of COVID-19 in the United States. OBJECTIVE To use the National COVID Cohort Collaborative (N3C), a large, multicenter, longitudinal cohort, to characterize the use of hydroxychloroquine, remdesivir, and dexamethasone, overall as well as across individuals, health systems, and time. DESIGN Retrospective cohort study. SETTING 43 health systems in the United States. PARTICIPANTS 137 870 adults hospitalized with COVID-19 between 1 February 2020 and 28 February 2021. MEASUREMENTS Inpatient use of hydroxychloroquine, remdesivir, or dexamethasone. RESULTS Among 137 870 persons hospitalized with confirmed or suspected COVID-19, 8754 (6.3%) received hydroxychloroquine, 29 272 (21.2%) remdesivir, and 53 909 (39.1%) dexamethasone during the study period. Since the release of results from the RECOVERY (Randomised Evaluation of COVID-19 Therapy) trial in mid-June, approximately 78% to 84% of people who have had invasive mechanical ventilation have received dexamethasone or other glucocorticoids. The use of hydroxychloroquine increased during March 2020, peaking at 42%, and started declining by April 2020. By contrast, remdesivir and dexamethasone use gradually increased over the study period. Dexamethasone and remdesivir use varied substantially across health centers (intraclass correlation coefficient, 14.2% for dexamethasone and 84.6% for remdesivir). LIMITATION Because most N3C data contributors are academic medical centers, findings may not reflect the experience of community hospitals. CONCLUSION Dexamethasone, an evidence-based treatment of COVID-19, may be underused among persons who are mechanically ventilated. The use of remdesivir and dexamethasone varied across health systems, suggesting variation in patient case mix, drug access, treatment protocols, and quality of care. PRIMARY FUNDING SOURCE National Center for Advancing Translational Sciences; National Heart, Lung, and Blood Institute; and National Institute on Aging.
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Affiliation(s)
- Hemalkumar B Mehta
- Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland (H.B.M., H.A., K.M.A., E.S.R., C.J.)
| | - Huijun An
- Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland (H.B.M., H.A., K.M.A., E.S.R., C.J.)
| | - Kathleen M Andersen
- Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland (H.B.M., H.A., K.M.A., E.S.R., C.J.)
| | | | | | - Emaan S Rashidi
- Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland (H.B.M., H.A., K.M.A., E.S.R., C.J.)
| | - Benjamin Bates
- Rutgers Center for Pharmacoepidemiology and Treatment Science, New Brunswick, New Jersey (B.B., S.S.)
| | - Soko Setoguchi
- Rutgers Center for Pharmacoepidemiology and Treatment Science, New Brunswick, New Jersey (B.B., S.S.)
| | - Corey Joseph
- Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland (H.B.M., H.A., K.M.A., E.S.R., C.J.)
| | - Paul T Kocis
- Penn State Health, Milton S. Hershey Medical Center, Hershey, Pennsylvania (P.T.K.)
| | | | - Tellen D Bennett
- University of Colorado School of Medicine, University of Colorado, Aurora, Colorado (T.D.B.)
| | - Christopher G Chute
- Schools of Medicine, Public Health, and Nursing, Johns Hopkins University, Baltimore, Maryland (C.G.C.)
| | - Brian T Garibaldi
- Johns Hopkins University School of Medicine, Baltimore, Maryland (B.T.G.)
| | - G Caleb Alexander
- Johns Hopkins Bloomberg School of Public Health and Johns Hopkins School of Medicine, Baltimore, Maryland (G.C.A.)
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Walji S, Carroll JC, Haber C. Experiences of patients with a disability in receiving primary health care: Using experience-based design for quality improvement. CANADIAN FAMILY PHYSICIAN MEDECIN DE FAMILLE CANADIEN 2021; 67:517-524. [PMID: 34261715 DOI: 10.46747/cfp.6707517] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Subscribe] [Scholar Register] [Indexed: 11/18/2022]
Abstract
OBJECTIVE To use patient-guided tours to gain insight into the experiences of patients with disabilities receiving primary care, with the goal of suggesting improvements. DESIGN A qualitative experience-based design study, using patient-guided tours. SETTING Multidisciplinary academic urban primary care practice. PARTICIPANTS Patients with disabilities identified by their health care providers. METHODS Patients walked through the clinic as they would on a "typical visit" describing their feelings and experiences. The investigator used a semistructured interview guide to prompt the patient. The tour was audiorecorded and transcribed. Thematic content analysis was used. MAIN FINDINGS Participants included 18 patients with various disabilities (physical disability, sensory disability, chronic illness, mental illness, learning disability, developmental disability). Strong positive relationships, particularly with the team and administrative staff, profoundly affected perceived access and experience of care. Multidirectional, clear, and respectful communication independently improved patients' experiences dramatically. Participants said that many access, coordination, and physical barriers were eased by team relationships and communication. Physical space and building issues were troublesome for those with physical and mental disabilities alike. Each participant's disability itself played a role in their experience but was not described as prominently as their relationship, communication, and spatial challenges. Participants described the patient-guided tour method as valuable to elicit experiences and feelings. CONCLUSION Some health care teams are unaware of how relationships and communication affect every aspect of health care for people with disabilities. Highlighting these findings with providers and organizations might prompt a more patient-centred model of care. Our experience-based design consisting of patient-guided tours was effective in assessing how those with disabilities experienced care.
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Affiliation(s)
- Sakina Walji
- Lecturer at the University of Toronto and a family physician in the Department of family Medicine at Mount Sinai Hospital, Sinai Health System, Toronto, Ont
| | - June C Carroll
- Professor, a clinician scientist, and Sydney G. Frankfort Chair in Family Medicine in the Department of Family and Community Medicine at the University of Toronto
| | - Cleo Haber
- Clinical social worker in the Department of Family Medicine at Mount Sinai Hospital
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Pinot de Moira A, Haakma S, Strandberg-Larsen K, van Enckevort E, Kooijman M, Cadman T, Cardol M, Corpeleijn E, Crozier S, Duijts L, Elhakeem A, Eriksson JG, Felix JF, Fernández-Barrés S, Foong RE, Forhan A, Grote V, Guerlich K, Heude B, Huang RC, Järvelin MR, Jørgensen AC, Mikkola TM, Nader JLT, Pedersen M, Popovic M, Rautio N, Richiardi L, Ronkainen J, Roumeliotaki T, Salika T, Sebert S, Vinther JL, Voerman E, Vrijheid M, Wright J, Yang TC, Zariouh F, Charles MA, Inskip H, Jaddoe VWV, Swertz MA, Nybo Andersen AM. The EU Child Cohort Network's core data: establishing a set of findable, accessible, interoperable and re-usable (FAIR) variables. Eur J Epidemiol 2021; 36:565-580. [PMID: 33884544 PMCID: PMC8159791 DOI: 10.1007/s10654-021-00733-9] [Citation(s) in RCA: 19] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/15/2020] [Accepted: 02/14/2021] [Indexed: 10/24/2022]
Abstract
The Horizon2020 LifeCycle Project is a cross-cohort collaboration which brings together data from multiple birth cohorts from across Europe and Australia to facilitate studies on the influence of early-life exposures on later health outcomes. A major product of this collaboration has been the establishment of a FAIR (findable, accessible, interoperable and reusable) data resource known as the EU Child Cohort Network. Here we focus on the EU Child Cohort Network's core variables. These are a set of basic variables, derivable by the majority of participating cohorts and frequently used as covariates or exposures in lifecourse research. First, we describe the process by which the list of core variables was established. Second, we explain the protocol according to which these variables were harmonised in order to make them interoperable. Third, we describe the catalogue developed to ensure that the network's data are findable and reusable. Finally, we describe the core data, including the proportion of variables harmonised by each cohort and the number of children for whom harmonised core data are available. EU Child Cohort Network data will be analysed using a federated analysis platform, removing the need to physically transfer data and thus making the data more accessible to researchers. The network will add value to participating cohorts by increasing statistical power and exposure heterogeneity, as well as facilitating cross-cohort comparisons, cross-validation and replication. Our aim is to motivate other cohorts to join the network and encourage the use of the EU Child Cohort Network by the wider research community.
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Affiliation(s)
- Angela Pinot de Moira
- Section for Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
| | - Sido Haakma
- Genomics Coordination Center, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
| | - Katrine Strandberg-Larsen
- Section for Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
| | - Esther van Enckevort
- Genomics Coordination Center, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
| | - Marjolein Kooijman
- Department of Pediatrics, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
- Generation R Study Group, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Tim Cadman
- Population Health Science, Bristol Medical School, Bristol, BS8 2BN, UK
- MRC Integrative Epidemiology Unit, University of Bristol, Bristol, BS8 2PS, UK
| | - Marloes Cardol
- Department of Epidemiology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
| | - Eva Corpeleijn
- Department of Epidemiology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
| | - Sarah Crozier
- MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK
- NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, 2 Venture Road, Chilworth, Southampton, SO16 7NP, UK
| | - Liesbeth Duijts
- Department of Pediatrics, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
- Generation R Study Group, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Ahmed Elhakeem
- Population Health Science, Bristol Medical School, Bristol, BS8 2BN, UK
- MRC Integrative Epidemiology Unit, University of Bristol, Bristol, BS8 2PS, UK
| | - Johan G Eriksson
- Department of General Practice and Primary Health Care, University of Helsinki and Helsinki University Hospital, Helsinki, Finland
- Folkhälsan Research Center, Helsinki, Finland
- Obstetrics and Gynecology, Yong Loo Lin School of Medicine, National University of Singapore and National University Health System, Singapore, Singapore
- Singapore Institute for Clinical Sciences (SICS), Agency for Science and Technology (A*STAR), Singapore, Singapore
| | - Janine F Felix
- Department of Pediatrics, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
- Generation R Study Group, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Sílvia Fernández-Barrés
- ISGlobal, Barcelona, Spain
- Universitat Pompeu Fabra (UPF), Barcelona, Spain
- CIBER Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain
| | - Rachel E Foong
- Telethon Kids Institute, Perth, WA, Australia
- School of Physiotherapy and Exercise Science, Curtin University, Perth, WA, Australia
| | - Anne Forhan
- Université de Paris, Centre for Research in Epidemiology and Statistics (CRESS), INSERM, INRAE, Paris, France
| | - Veit Grote
- Division of Metabolic and Nutritional Medicine, Department of Pediatrics, Dr. von Hauner Children's Hospital, LMU University Hospital Munich, Munich, Germany
| | - Kathrin Guerlich
- Division of Metabolic and Nutritional Medicine, Department of Pediatrics, Dr. von Hauner Children's Hospital, LMU University Hospital Munich, Munich, Germany
| | - Barbara Heude
- Université de Paris, Centre for Research in Epidemiology and Statistics (CRESS), INSERM, INRAE, Paris, France
| | | | - Marjo-Riitta Järvelin
- Faculty of Medicine, Center for Life-Course Health Research, University of Oulu, P.O. Box 5000, 90014, Oulu, Finland
- Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, UK
| | - Anne Cathrine Jørgensen
- Section for Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
| | - Tuija M Mikkola
- Folkhälsan Research Center, Helsinki, Finland
- Clinicum, Faculty of Medicine, University of Helsinki, Helsinki, Finland
| | - Johanna L T Nader
- Department of Genetics and Bioinformatics, Division of Health Data and Digitalisation, Norwegian Institute of Public Health, Oslo, Norway
| | - Marie Pedersen
- Section for Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
| | - Maja Popovic
- Cancer Epidemiology Unit, Department of Medical Sciences, University of Turin, Turin, Italy
| | - Nina Rautio
- Faculty of Medicine, Center for Life-Course Health Research, University of Oulu, P.O. Box 5000, 90014, Oulu, Finland
| | - Lorenzo Richiardi
- Cancer Epidemiology Unit, Department of Medical Sciences, University of Turin, Turin, Italy
| | - Justiina Ronkainen
- Faculty of Medicine, Center for Life-Course Health Research, University of Oulu, P.O. Box 5000, 90014, Oulu, Finland
| | - Theano Roumeliotaki
- Department of Social Medicine, Faculty of Medicine, University of Crete, Heraklion, Crete, Greece
| | - Theodosia Salika
- MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK
| | - Sylvain Sebert
- Faculty of Medicine, Center for Life-Course Health Research, University of Oulu, P.O. Box 5000, 90014, Oulu, Finland
| | - Johan L Vinther
- Section for Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
| | - Ellis Voerman
- Department of Pediatrics, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
- Generation R Study Group, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Martine Vrijheid
- ISGlobal, Barcelona, Spain
- Universitat Pompeu Fabra (UPF), Barcelona, Spain
- CIBER Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain
| | - John Wright
- Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK
| | - Tiffany C Yang
- Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK
| | - Faryal Zariouh
- Université de Paris, Centre for Research in Epidemiology and Statistics (CRESS), INSERM, INRAE, Paris, France
| | - Marie-Aline Charles
- Université de Paris, Centre for Research in Epidemiology and Statistics (CRESS), INSERM, INRAE, Paris, France
- ELFE Joint Unit, French Institute for Demographic Studies (Ined), French Institute for Medical Research and Health (INSERM), French Blood Agency, Aubervilliers, France
| | - Hazel Inskip
- MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK
- NIHR Southampton Biomedical Research Centre, University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK
| | - Vincent W V Jaddoe
- Department of Pediatrics, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
- Generation R Study Group, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Morris A Swertz
- Genomics Coordination Center, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
- Department of Genetics, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
| | - Anne-Marie Nybo Andersen
- Section for Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
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Block RG, Puro J, Cottrell E, Lunn MR, Dunne MJ, Quiñones AR, Chung B, Pinnock W, Reid GM, Heintzman J. Recommendations for improving national clinical datasets for health equity research. J Am Med Inform Assoc 2021; 27:1802-1807. [PMID: 32885240 DOI: 10.1093/jamia/ocaa144] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/20/2019] [Revised: 06/05/2020] [Accepted: 06/22/2020] [Indexed: 11/12/2022] Open
Abstract
Health and healthcare disparities continue despite clinical, research, and policy efforts. Large clinical datasets may not contain data relevant to healthcare disparities and leveraging these for research may be crucial to improve health equity. The Health Disparities Collaborative Research Group was commissioned by the Patient-Centered Outcomes Research Institute to examine the data science needs for quality and complete data and provide recommendations for improving data science around health disparities. The group convened content experts, researchers, clinicians, and patients to produce these recommendations and suggestions for implementation. Our desire was to produce recommendations to improve the usability of healthcare datasets for health equity research. The recommendations are summarized in 3 primary domains: patient voice, accurate variables, and data linkage. The implementation of these recommendations in national datasets has the potential to accelerate health disparities research and promote efforts to reduce health inequities.
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Affiliation(s)
| | - Jon Puro
- Department of Research, OCHIN, Portland, Oregon, USA
| | - Erika Cottrell
- Department of Research, OCHIN, Portland, Oregon, USA.,Department of Family Medicine, Oregon Health and Science University, Portland, Oregon, USA
| | - Mitchell R Lunn
- Division of Nephrology, Department of Medicine, Stanford University School of Medicine, Stanford, California, USA
| | - M J Dunne
- Department of Research, OCHIN, Portland, Oregon, USA
| | - Ana R Quiñones
- Department of Research, OCHIN, Portland, Oregon, USA.,Department of Family Medicine, Oregon Health and Science University, Portland, Oregon, USA
| | - Bowen Chung
- Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, California, USA
| | | | - Georgia M Reid
- Department of Research, OCHIN, Portland, Oregon, USA.,Department of Sociology and Anthropology, Lewis and Clark College, Portland, Oregon, USA
| | - John Heintzman
- Department of Research, OCHIN, Portland, Oregon, USA.,Department of Family Medicine, Oregon Health and Science University, Portland, Oregon, USA
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Harb JL, Crawford KL, Simmonds JC, Roberts C, Scott AR. Race, Income, and the Timeliness of Cleft Palate Repair in the United States. Cureus 2021; 13:e13414. [PMID: 33758709 PMCID: PMC7978132 DOI: 10.7759/cureus.13414] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/05/2022] Open
Abstract
Objective To determine if differences exist in the timing of cleft palate repair with respect to sex, race, income, and geographical location within the United States. Design Retrospective cross-sectional study using the Kids' Inpatient Database (KID) from 1997 to 2009. Setting Inpatient. Patients Children with cleft palate with or without cleft lip undergoing inpatient cleft palate repair. Main outcome measures Age at the time of palatoplasty (in months) by sex, race, income quartile, and geographic location. Results A total of 7,218 children with cleft palate underwent repair at a mean age of 12.1 months (95% CI 12.0-12.3). Females underwent palatoplasty at an older age (13.6 months) than males (13.2 months), a difference of 0.47 months (SE: 0.19, p=0.015). White children underwent surgery at an earlier age (12.1 months) than Black (12.9 months) (difference: 0.73 months, SE: 0.37, p=0.045), Hispanic (12.7 months) (difference: 0.57 months, SE 0.25, p=0.025), and Asian children (15.7 months) (difference: 3.60 months, SE 0.49, p<0.0001). Asian children were also found to undergo repair later than Hispanic (difference 3.03 months, SE 0.51, p<0.0001) and Black (difference: 2.87 months, SE 0.59, p<0.0001) children. Patients born into the highest income brackets were repaired 0.75 months earlier than those in the lowest bracket (SE: 0.26, p=0.005). Patients in the Midwest underwent palatoplasty later (14.3 months) than in the Northeast (12.9 months) (difference: 1.36 months, SE: 0.31, p<0.0001), South (13.2 months) (difference: 1.05 months, SE: 0.36, p=0.004), and West (13.2 months) (difference: 1.09 months, SE: 0.32, p=0.0007). Conclusions After controlling for confounding factors, our results suggest that in recent history, Black, Hispanic, and Asian children with cleft palate were repaired later than their White counterparts. In addition, children of affluent families were repaired earliest, and economically disadvantaged children were repaired later than their peers.
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Affiliation(s)
- Jennifer L Harb
- Otolaryngology - Head and Neck Surgery, Tufts Medical Center, Boston, USA
| | - Kayva L Crawford
- Otolaryngology - Head and Neck Surgery, University of California San Diego School of Medicine, San Diego, USA
| | - Jonathan C Simmonds
- Otolaryngology - Head and Neck Surgery, Massachusetts Eye and Ear, Boston, USA
| | - Cullen Roberts
- Surgery, Brigham and Women's Hospital, Harvard Medical School, Boston, USA
| | - Andrew R Scott
- Pediatric Otolaryngology and Facial Plastic Surgery, Tufts Children's Hospital, Boston, USA
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Patel AGM, Hsiao CJ, Fasanya HO, Stoffel M, Lyon ME. Accuracy in Measuring Racial Disparities during the COVID-19 Pandemic Needs Improvement. J Appl Lab Med 2021; 6:310-313. [PMID: 33300994 PMCID: PMC7798964 DOI: 10.1093/jalm/jfaa212] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/01/2020] [Accepted: 10/26/2020] [Indexed: 01/07/2023]
Affiliation(s)
- Aditi G M Patel
- Department of Medicine, College of Medicine, University of Florida, Gainesville, FL, USA.,Department of Health Outcomes & Biomedical Informatics, College of Medicine, University of Florida, Gainesville, FL, USA
| | - Chu J Hsiao
- MD-PhD Program, College of Medicine, University of Florida, Gainesville, FL, USA.,Department of Anthropology, College of Liberal Arts & Sciences, University of Florida, Gainesville, FL, USA
| | - Henrietta O Fasanya
- MD-PhD Program, College of Medicine, University of Florida, Gainesville, FL, USA.,Department of Pathology, College of Medicine, University of Florida, Gainesville, FL, USA
| | - Michelle Stoffel
- Department of Laboratory Medicine, University of Washington, Seattle, WA, USA.,Department of Biomedical Informatics, University of Washington, Seattle, WA, USA
| | - Martha E Lyon
- Department of Laboratory Medicine, Royal University Hospital, Saskatchewan Health Authority, Saskatoon, SK, Canada
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Sholle ET, Pinheiro LC, Adekkanattu P, Davila MA, Johnson SB, Pathak J, Sinha S, Li C, Lubansky SA, Safford MM, Campion TR. Underserved populations with missing race ethnicity data differ significantly from those with structured race/ethnicity documentation. J Am Med Inform Assoc 2021; 26:722-729. [PMID: 31329882 DOI: 10.1093/jamia/ocz040] [Citation(s) in RCA: 53] [Impact Index Per Article: 13.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/10/2019] [Revised: 03/06/2019] [Accepted: 03/13/2019] [Indexed: 11/13/2022] Open
Abstract
OBJECTIVE We aimed to address deficiencies in structured electronic health record (EHR) data for race and ethnicity by identifying black and Hispanic patients from unstructured clinical notes and assessing differences between patients with or without structured race/ethnicity data. MATERIALS AND METHODS Using EHR notes for 16 665 patients with encounters at a primary care practice, we developed rule-based natural language processing (NLP) algorithms to classify patients as black/Hispanic. We evaluated performance of the method against an annotated gold standard, compared race and ethnicity between NLP-derived and structured EHR data, and compared characteristics of patients identified as black or Hispanic using only NLP vs patients identified as such only in structured EHR data. RESULTS For the sample of 16 665 patients, NLP identified 948 additional patients as black, a 26%increase, and 665 additional patients as Hispanic, a 20% increase. Compared with the patients identified as black or Hispanic in structured EHR data, patients identified as black or Hispanic via NLP only were older, more likely to be male, less likely to have commercial insurance, and more likely to have higher comorbidity. DISCUSSION Structured EHR data for race and ethnicity are subject to data quality issues. Supplementing structured EHR race data with NLP-derived race and ethnicity may allow researchers to better assess the demographic makeup of populations and draw more accurate conclusions about intergroup differences in health outcomes. CONCLUSIONS Black or Hispanic patients who are not documented as such in structured EHR race/ethnicity fields differ significantly from those who are. Relatively simple NLP can help address this limitation.
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Affiliation(s)
- Evan T Sholle
- Information Technologies & Services Department, Weill Cornell Medicine, New York, New York, USA
| | - Laura C Pinheiro
- Department of Medicine, Weill Cornell Medicine, New York, New York, USA
| | - Prakash Adekkanattu
- Information Technologies & Services Department, Weill Cornell Medicine, New York, New York, USA
| | - Marcos A Davila
- Information Technologies & Services Department, Weill Cornell Medicine, New York, New York, USA
| | - Stephen B Johnson
- Department of Healthcare Policy & Research, Weill Cornell Medicine, New York, New York, USA
| | - Jyotishman Pathak
- Department of Healthcare Policy & Research, Weill Cornell Medicine, New York, New York, USA
| | - Sanjai Sinha
- Department of Medicine, Weill Cornell Medicine, New York, New York, USA
| | - Cassidie Li
- Department of Medicine, Weill Cornell Medicine, New York, New York, USA
| | - Stasi A Lubansky
- Department of Medicine, Weill Cornell Medicine, New York, New York, USA
| | - Monika M Safford
- Department of Medicine, Weill Cornell Medicine, New York, New York, USA
| | - Thomas R Campion
- Information Technologies & Services Department, Weill Cornell Medicine, New York, New York, USA.,Department of Healthcare Policy & Research, Weill Cornell Medicine, New York, New York, USA.,Department of Pediatrics, Weill Cornell Medicine, New York, New York, USA
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Patel P, Muller C, Paul S. Racial disparities in nonalcoholic fatty liver disease clinical trial enrollment: A systematic review and meta-analysis. World J Hepatol 2020; 12:506-518. [PMID: 32952877 PMCID: PMC7475777 DOI: 10.4254/wjh.v12.i8.506] [Citation(s) in RCA: 16] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/13/2020] [Revised: 07/09/2020] [Accepted: 07/26/2020] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Non-alcoholic fatty liver disease (NAFLD) has a heterogeneous distribution across racial and ethnic groups, with a disproportionate burden among Hispanics. Although there are currently no approved therapies for treatment of NAFLD, several therapies have been investigated in clinical trials.
AIM To analyze the inclusion of racial and ethnic minority groups in clinical trials for NAFLD.
METHODS We performed a systematic review of North American, English-language, prospective studies for NAFLD therapies published from 2005 to 2019. Racial and ethnic enrollment data were recorded for each eligible study. Meta-analysis was performed to compute pooled prevalence of different racial and ethnic groups, followed by further subgroup analyses. These analyses were based on diagnosis of non-alcoholic steatohepatitis (NASH) and timing of study on enrollment by ethnicity. Descriptive statistics were performed to compare racial and ethnic study enrollment to previously reported NAFLD population prevalence.
RESULTS Thirty-eight studies met criteria for inclusion in the systematic review. When reported, median age of enrolled subjects was 49 years (range 41.5-58) with 56% female participants. NAFLD was defined through biopsy findings in 79% (n = 30) of the studies. Of the included articles, treatment modalities ranged from medications (n = 28, 74%), lifestyle interventions (n = 5, 13%), bariatric surgery (n = 4, 11%) and phlebotomy (n = 1, 2%). Twenty-eight studies (73%) included racial and/or ethnic demographic information, while only 17 (45%) included information regarding Hispanic participation. Of the 2983 patients enrolled in all eligible trials, a total of only 346 (11.6%) Hispanic participants was reported. Meta-analysis revealed a pooled Hispanic prevalence of 24.3% (95% confidence interval 16.6-32.0, I2 94.6%) among studies documenting Hispanic enrollment. Hispanic enrollment increased over time from 15% from 2005-2014 to 37% from 2015-2019.
CONCLUSION In a meta-analysis of NAFLD trials, documentation of racial/ethnic demographic data occurred in less than half of studies. Standardization of reporting of race/ethnicity and targeted interventions toward minority recruitment are needed to improve diversity of enrollment.
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Affiliation(s)
- Parita Patel
- Section of Gastroenterology, Hepatology, and Nutrition, University of Chicago Medical Center, Chicago, IL 60637, United States
| | - Charles Muller
- Section of Gastroenterology, Hepatology, and Nutrition, University of Chicago Medical Center, Chicago, IL 60637, United States
| | - Sonali Paul
- Section of Gastroenterology, Hepatology, and Nutrition, University of Chicago Medical Center, Chicago, IL 60637, United States
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Horth RZ, Wagstaff S, Jeppson T, Patel V, McClellan J, Bissonette N, Friedrichs M, Dunn AC. Use of electronic health records from a statewide health information exchange to support public health surveillance of diabetes and hypertension. BMC Public Health 2019; 19:1106. [PMID: 31412826 PMCID: PMC6694493 DOI: 10.1186/s12889-019-7367-z] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/08/2019] [Accepted: 07/24/2019] [Indexed: 11/12/2022] Open
Abstract
Background Electronic health record (EHR) data, collected primarily for individual patient care and billing purposes, compiled in health information exchanges (HIEs) may have a secondary use for population health surveillance of noncommunicable diseases. However, data compilation across fragmented data sources into HIEs presents potential barriers and quality of data is unknown. Methods We compared 2015 patient data from a mid-size health system (Database A) to data from System A patients in the Utah HIE (Database B). We calculated concordance of structured data (sex and age) and unstructured data (blood pressure reading and A1C). We estimated adjusted hypertension and diabetes prevalence in each database and compared these across age groups. Results Matching resulted in 72,356 unique patients. Concordance between Database A and Database B exceeded 99% for sex and age, but was 89% for A1C results and 54% for blood pressure readings. Sensitivity, using Database A as the standard, was 57% for hypertension and 55% for diabetes. Age and sex adjusted prevalence of diabetes (8.4% vs 5.8%, Database A and B, respectively) and hypertension (14.5% vs 11.6%, respectively) differed, but this difference was consistent with parallel slopes in prevalence over age groups in both databases. Conclusions We identified several gaps in the use of HIE data for surveillance of diabetes and hypertension. High concordance of structured data demonstrate some promise in HIEs capacity to capture patient data. Improving HIE data quality through increased use of structured variables may help make HIE data useful for population health surveillance in places with fragmented EHR systems. Electronic supplementary material The online version of this article (10.1186/s12889-019-7367-z) contains supplementary material, which is available to authorized users.
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Affiliation(s)
- Roberta Z Horth
- Epidemic Intelligence Service, Division of Scientific Education and Professional Development, CDC, Atlanta, Georgia, USA. .,Utah Department of Health, Salt Lake City, UT, 84114, USA.
| | | | - Theron Jeppson
- Utah Department of Health, Salt Lake City, UT, 84114, USA
| | - Vishal Patel
- Utah Health Information Network, Murray, UT, USA
| | | | | | | | - Angela C Dunn
- Utah Department of Health, Salt Lake City, UT, 84114, USA
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Kiran T, Sandhu P, Aratangy T, Devotta K, Lofters A, Pinto AD. Patient perspectives on routinely being asked about their race and ethnicity: Qualitative study in primary care. CANADIAN FAMILY PHYSICIAN MEDECIN DE FAMILLE CANADIEN 2019; 65:e363-e369. [PMID: 31413042 PMCID: PMC6693598] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Subscribe] [Scholar Register] [Indexed: 06/10/2023]
Abstract
OBJECTIVE To understand patients' perspectives on responding to a question about their race and ethnicity in a primary care setting. DESIGN Qualitative study using semistructured individual interviews conducted between May and July 2016. SETTING An academic family health team in Toronto, Ont, where collection of sociodemographic data has been routine since 2013. PARTICIPANTS Twenty-seven patients from 5 of the 6 clinic sites of the family health team, ranging in age, sex, educational background, and immigration status. METHODS Semistructured interviews were conducted with patients who completed a sociodemographic questionnaire after registration for their medical appointment. Patients were asked whether responding to the question was difficult or uncomfortable, how they interpreted the term race and ethnicity, and what response options they considered. Interviews were audiorecorded, transcribed, and coded iteratively. MAIN FINDINGS Patients did not report discomfort with responding to a question about race and ethnicity in their family doctor's office. Although many patients considered the question straightforward, some patients reported different interpretations of the question. For example, some thought the question about race and ethnicity related to parental origin or ancestry, whereas others considered the question to be about personal place of birth or upbringing. Many patients appreciated being able to select from a variety of specific response options, but this also posed a difficulty for patients who could not easily find an option that reflected their identity. Patients with mixed heritage experienced the most challenges selecting a response. CONCLUSION Patients attending a primary care clinic were not uncomfortable responding to a question about race and ethnicity. However, patients had different interpretations of what was being asked. Future research should explore perspectives of patients in other primary care settings and test different methods for collecting data about their race and ethnicity.
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Affiliation(s)
- Tara Kiran
- Family physician at St Michael's Hospital Academic Family Health Team in Toronto, Ont, Associate Scientist in the MAP Centre for Urban Health Solutions at the Li Ka Shing Knowledge Institute at St Michael's Hospital, Associate Professor and Vice Chair Quality and Innovation in the Department of Family and Community Medicine at the University of Toronto, and Adjunct Scientist at ICES in Toronto.
| | - Priya Sandhu
- MD candidate in the Faculty of Medicine at the University of Toronto
| | - Tatiana Aratangy
- Unit Lead in the Survey Research Unit at the Li Ka Shing Knowledge Institute at St Michael's Hospital
| | | | - Aisha Lofters
- Scientist at the MAP Centre for Urban Health Solutions in the Li Ka Shing Knowledge Institute at St Michael's Hospital, a staff physician in the Department of Family and Community Medicine at St Michael's Hospital, Assistant Professor and Clinician Scientist in the Department of Family and Community Medicine at the University of Toronto, Adjunct Scientist at ICES, and Assistant Professor in the Dalla Lana School of Public Health at the University of Toronto
| | - Andrew D Pinto
- Founder and director of the Upstream Lab at the MAP Centre for Urban Health Solutions in the Li Ka Shing Knowledge Institute at St Michael's Hospital, a family physician and public health and preventive medicine specialist in the Department of Family and Community Medicine at St Michael's Hospital, Associate Director for Clinical Research at the University of Toronto Practice-Based Research Network, Assistant Professor in the Department of Family and Community Medicine at the University of Toronto, and Assistant Professor (status only) in the Institute for Health Policy, Management and Evaluation and the Division of Clinical Public Health in the Dalla Lana School of Public Health
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Waheed A, Djurdjev O, Dong J, Gill J, Barbour S. Validation of Self-Reported Race in a Canadian Provincial Renal Administrative Database. Can J Kidney Health Dis 2019; 6:2054358119859528. [PMID: 31308951 PMCID: PMC6604118 DOI: 10.1177/2054358119859528] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/09/2019] [Accepted: 05/20/2019] [Indexed: 11/18/2022] Open
Abstract
Background: Administrative data are commonly used to study clinical outcomes in renal
disease. Race is an important determinant of renal health delivery and
outcomes in Canada but is not validated in most administrative data, and the
correlation with census-based definitions of race is unknown. Objectives: Validation of self-reported race (SRR) in a Canadian provincial renal
administrative database (Patient Records and Outcome Management Information
System [PROMIS]) and comparison with the Canadian census categories of
race. Design: Prospective patient survey study to validate SRR in PROMIS. Setting: British Columbia, Canada. Patients: Adult patients registered in PROMIS. Measurements: Survey SRR was used as gold standard to validate SRR in PROMIS. Self-reported
race in PROMIS was compared with census race categories. Methods: This is a cross-sectional telephone survey of a random sample of all adults
in PROMIS conducted between February 2016 and November 2016. Responders
selected a race category from PROMIS and from the Canadian census.
Sensitivity (Sn) and specificity (Sp) were calculated with 95% confidence
intervals (CIs). Results: A total of 21 039 patients met inclusion criteria, 1677 were selected for the
survey and 637 participated (38% response rate). There were no differences
between the PROMIS, sampled, and responder populations. PROMIS SRR had an
accuracy of 95.3% (95% CI: 94.2%-97.0%) when validated against the survey
SRR with Sn and Sp ≥90% in all race groups except in Aboriginals (Sn 87.5%).
The positive and negative predictive values were ≥95%, except in very low
and high–prevalence groups, respectively. The Canadian census had an
accuracy of 95.7% (95% CI: 94.4%-97.6%) when validated against PROMIS SRR
with Sn and Sp ≥90%. The results did not differ in subgroups based on age,
sex, birth outside Canada, or renal group (glomerulonephritis, chronic
kidney disease, hemodialysis, peritoneal dialysis, transplant recipients, or
live donors). Limitations: Analysis of minority groups and lower prevalence groups is limited by sample
size. Results may not be generalizable to other administrative
databases. Conclusions: We have shown high accuracy of PROMIS SRR that validates its use in the
secondary analysis of administrative data for research. There is high
correlation between PROMIS and census race categories which allows linkage
with other data sources that use census-based definitions of race.
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Affiliation(s)
- Aiza Waheed
- The University of British Columbia, Vancouver, Canada
| | | | | | - Jagbir Gill
- The University of British Columbia, Vancouver, Canada.,BC Provincial Renal Agency, Vancouver, Canada
| | - Sean Barbour
- The University of British Columbia, Vancouver, Canada.,BC Provincial Renal Agency, Vancouver, Canada
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Lindberg NM, Vega-López S, LeBlanc ES, Leo MC, Stevens VJ, Gille S, Arias-Gastélum M, Shuster E, Meenan R, Vaughn KA, Shaw MC, Turner A. High Prevalence of Undiagnosed Hyperglycemia in Low-Income Overweight and Obese Hispanic Women in Oregon. J Racial Ethn Health Disparities 2019; 6:799-805. [PMID: 30859515 DOI: 10.1007/s40615-019-00578-9] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/02/2018] [Revised: 02/04/2019] [Accepted: 02/24/2019] [Indexed: 01/03/2023]
Abstract
BACKGROUND Overweight Hispanic women are at high risk for type 2 diabetes. A clinical diagnosis of hyperglycemia is often necessary to access interventions. We examined the prevalence of undiagnosed hyperglycemia among a group of low-income overweight or obese Hispanic women, who were receiving care at a Federally Qualified Health Center (FQHC). METHODS Among 196 overweight or obese Hispanic women (mean age 44 ± 10 years, mean weight 86.8 ± 16.5 kg, mean body mass index [BMI] 36.5 ± 6.4 kg/m2) enrolled in a randomized clinical weight-loss trial, we compared A1C and fasting blood glucose (FBG) obtained at baseline with women's existing diabetes and prediabetes diagnoses in the medical record. RESULTS According to the information in participants' medical records, 36% (70/196) had diagnosed diabetes, 20% (39/196) had a diagnosis of prediabetes, and the remaining 44% (87/196) had neither diagnosis. Among participants without a diagnosis of diabetes or prediabetes during the baseline screening for our study, 63% (55/87) had at least one test in the prediabetes range (baseline A1C and FBG were in prediabetes range for 39 and 55 participants, respectively), and 13% (11/87) had at least one test in the diabetic range (baseline A1C and FBG values in diabetes range for 3 and 11 participants, respectively). DISCUSSION We found substantial prevalence of undiagnosed hyperglycemia among a sample of overweight and obese Hispanic women. It is possible that limited awareness of diabetes risk may be a barrier to patient compliance with screening recommendations.
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Affiliation(s)
- Nangel M Lindberg
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA.
| | - Sonia Vega-López
- College of Health Solutions, Arizona State University, Phoenix, AZ, USA
| | - Erin S LeBlanc
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Michael C Leo
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Victor J Stevens
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Sara Gille
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | | | - Elizabeth Shuster
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Richard Meenan
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Katherine A Vaughn
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Meagan C Shaw
- Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave., Portland, OR, 97227, USA
| | - Ann Turner
- Virginia Garcia Memorial Health Center, Cornelius, OR, USA
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Gunn CM, Fitzpatrick A, Waugh S, Carrera M, Kressin NR, Paasche-Orlow MK, Battaglia TA. A Qualitative Study of Spanish-Speakers' Experience with Dense Breast Notifications in a Massachusetts Safety-Net Hospital. J Gen Intern Med 2019; 34:198-205. [PMID: 30350031 PMCID: PMC6374252 DOI: 10.1007/s11606-018-4709-y] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/01/2018] [Revised: 09/04/2018] [Accepted: 10/01/2018] [Indexed: 12/01/2022]
Abstract
BACKGROUND Legislation requiring mammography facilities to notify women if they have dense breast tissue found on mammography has been enacted in 34 US states. The impact of dense breast notifications (DBNs) on women with limited English proficiency (LEP) is unknown. OBJECTIVE This study sought to understand Spanish-speaking women's experience receiving DBNs in a Massachusetts safety-net hospital. DESIGN Eligible women completed one audio-recorded, semi-structured interview via telephone with a native Spanish-speaking research assistant trained in qualitative methods. Interviews were professionally transcribed verbatim and translated. The translation was verified by a third reviewer to ensure fidelity with audio recordings. PARTICIPANTS Nineteen Spanish-speaking women ages 40-74 who received mammography with a normal result and recalled receiving a DBN. APPROACH Using the verified English transcripts, we conducted a content analysis to identify women's perceptions and actions related to receiving the notification. A structured codebook was developed. Transcripts were independently coded and assessed for agreement with a modification of Cohen's kappa. Content codes were grouped to build themes related to women's perceptions and actions after receiving a DBN. KEY RESULTS Nineteen Spanish-speaking women completed interviews. Nine reported not receiving the notification in their native language. Four key themes emerged: (1) The novelty of breast density contributed to notification-induced confusion; (2) women misinterpreted key messages in the notification; (3) varied actions were taken to seek further information; and (4) women held unrealized expectations and preferences for follow-up. CONCLUSIONS Not having previous knowledge of breast density and receiving notifications in English contributed to confusion about its meaning and inaccurate interpretations of key messages by Spanish speakers. Tools that promote understanding should be leveraged in seeking equity in risk-based breast cancer screening for women with dense breasts.
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Affiliation(s)
- Christine M Gunn
- Women's Health Unit, Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, 801 Massachusetts Avenue, First Floor, Women's Health, Boston, MA, 02118, USA. .,Department of Health Law, Policy, and Management, School of Public Health, Boston University, Boston, MA, USA.
| | - Amy Fitzpatrick
- Women's Health Unit, Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, 801 Massachusetts Avenue, First Floor, Women's Health, Boston, MA, 02118, USA
| | - Sarah Waugh
- Women's Health Unit, Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, 801 Massachusetts Avenue, First Floor, Women's Health, Boston, MA, 02118, USA
| | - Michelle Carrera
- Women's Health Unit, Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, 801 Massachusetts Avenue, First Floor, Women's Health, Boston, MA, 02118, USA
| | - Nancy R Kressin
- Center for Healthcare Organization and Implementation Research (CHOIR), VA Boston Healthcare System, Boston, MA, USA.,Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, Boston, MA, USA
| | - Michael K Paasche-Orlow
- Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, Boston, MA, USA
| | - Tracy A Battaglia
- Women's Health Unit, Section of General Internal Medicine, Evans Department of Medicine, School of Medicine, Boston University, 801 Massachusetts Avenue, First Floor, Women's Health, Boston, MA, 02118, USA
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Howell EA, Ahmed ZN. Eight steps for narrowing the maternal health disparity gap: Step-by-step plan to reduce racial and ethnic disparities in care. CONTEMPORARY OB/GYN 2019; 64:30-36. [PMID: 31673195 PMCID: PMC6822100] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Grants] [Subscribe] [Scholar Register] [Indexed: 06/10/2023]
Affiliation(s)
- Elizabeth A Howell
- The Blavatnik Family Women's Health Research Institute, Mount Sinai Health System vice chair for research and professor in the Department of Obstetrics, Gynecology, and Reproductive Science at Icahn School of Medicine at Mount Sinai, New York
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Williams-Roberts H, Neudorf C, Abonyi S, Cushon J, Muhajarine N. Facilitators and barriers of sociodemographic data collection in Canadian health care settings: a multisite case study evaluation. Int J Equity Health 2018; 17:186. [PMID: 30591045 PMCID: PMC6307203 DOI: 10.1186/s12939-018-0903-0] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/22/2018] [Accepted: 12/13/2018] [Indexed: 11/28/2022] Open
Abstract
Background Despite growing awareness of the importance of social determinants of health, research remains limited about the implementation of sociodemographic data collection in Canadian health care settings. Little is known about the salient contextual factors that enable or hinder collection and use of social information to improve quality of care in clinical settings. This study examines the perceptions and experiences of managers and care providers to better understand how to support organizational efforts to collect and use sociodemographic data to provide equity-oriented care. Methods Case studies of three diverse urban health care settings employed semi-structured individual and group interviews with managers and care providers respectively to explore their experiences with implementation. Data was analyzed separately and in context for each site as part of an individual case study. A thematic analysis of interview transcripts was performed with an inductive approach to coding of segments of the text. Constructs of the Consolidated Framework for Implementation Research (CFIR) were used as an analytical framework to structure the data to support cross case comparisons of facilitators and barriers to implementation across settings. Results Several perceived facilitators and barriers to implementation were identified that clustered around three CFIR domains: intervention, inner setting and characteristics of individuals. Macro level (outer setting) factors were relatively unexplored. Sites were motivated by their recognition of need for social information to improve quality of care. Organizational readiness for implementation was demonstrated by priorities that reflected concern for equity in care, leadership support and commitment to an inclusive process for stakeholder engagement. Barriers included perceived relevance of only a subset of sociodemographic questions to service delivery, staff capacity and comfort with data collection as well as adequate resources (funding and time). Conclusion Although system level mandates were underexplored, they may accelerate adoption and implementation of sociodemographic data collection in the presence of organizational readiness. Standardized tools integrated into information systems and workflows would support adequately trained personnel. More research is needed to understand important factors in rural health settings and with clinical application to inform care delivery pathways. Electronic supplementary material The online version of this article (10.1186/s12939-018-0903-0) contains supplementary material, which is available to authorized users.
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Affiliation(s)
- Hazel Williams-Roberts
- Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Canada.
| | - Cory Neudorf
- Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Canada.,Population and Public Health, Saskatchewan Health Authority, Saskatoon, Canada
| | - Sylvia Abonyi
- Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Canada.,Saskatchewan Population Health and Evaluation Unit (SPHERU), Saskatoon, Canada
| | - Jennifer Cushon
- Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Canada.,Population and Public Health, Saskatchewan Health Authority, Saskatoon, Canada
| | - Nazeem Muhajarine
- Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Canada.,Saskatchewan Population Health and Evaluation Unit (SPHERU), Saskatoon, Canada
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Gordon EJ, Amόrtegui D, Blancas I, Wicklund C, Friedewald J, Sharp RR. African American Living Donors' Attitudes About APOL1 Genetic Testing: A Mixed Methods Study. Am J Kidney Dis 2018; 72:819-833. [PMID: 30360961 PMCID: PMC6252162 DOI: 10.1053/j.ajkd.2018.07.017] [Citation(s) in RCA: 32] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/18/2017] [Accepted: 07/24/2018] [Indexed: 12/16/2022]
Abstract
RATIONALE & OBJECTIVE African American live kidney donors ("donors") have a greater risk for kidney failure than European American donors. Apolipoprotein L1 gene (APOL1) variants in African Americans may be associated with this disparity. STUDY DESIGN Cross-sectional mixed-methods design. SETTING & PARTICIPANTS African American donors at 1 transplantation center. ANALYTICAL APPROACH Semistructured interviews assessed attitudes about APOL1 genetic testing, willingness to undergo APOL1 testing, hypothetical decisions about donating with 2 APOL1 variants, and demographics. Surveys assessed perceptions of ethnic identity and genetics knowledge. Interview transcriptions were analyzed using thematic analysis. Survey data were analyzed using descriptive statistics. RESULTS 23 donors participated in semistructured interviews. Most (96%) reported that transplantation centers should routinely offer APOL1 genetic testing to all African American potential donors. Most (87%) would have been willing to undergo APOL1 testing before donating. Although study participants noted that APOL1 testing may deter African American potential donors from donating, most (61%) would have donated even if they had 2 high-risk APOL1 variants. Several themes emerged. Study participants believed that APOL1 testing was beneficial for providing information to help donors make informed donation decisions. Participants expressed concern about APOL1 variants placing donors at harm for kidney failure, and therefore valued taking preventive health measures. Participants believed that potential donors would experience psychological distress from learning that they have 2 gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs of APOL1 testing and feared that APOL1 genetic test results could discriminate against African Americans. LIMITATIONS Findings may not be generalizable to African American potential donors. CONCLUSIONS Findings suggest that African American donors support APOL1 genetic testing yet fear that APOL1 variants and genetic testing could adversely affect donors' health and ethnic identity. Transplantation centers using APOL1 genetic testing should address African American donors' concerns about APOL1 genetic testing to optimize future donors' informed consent practices.
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Affiliation(s)
- Elisa J Gordon
- Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL; Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL; Center for Bioethics and Medical Humanities, Feinberg School of Medicine, Northwestern University, Chicago, IL.
| | - Daniela Amόrtegui
- Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL
| | - Isaac Blancas
- Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL
| | - Catherine Wicklund
- Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL
| | - John Friedewald
- Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL; Division of Internal Medicine, Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL
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Petkovic J, Duench SL, Welch V, Rader T, Jennings A, Forster AJ, Tugwell P. Potential harms associated with routine collection of patient sociodemographic information: A rapid review. Health Expect 2018; 22:114-129. [PMID: 30341795 PMCID: PMC6351414 DOI: 10.1111/hex.12837] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/14/2018] [Revised: 08/21/2018] [Accepted: 08/24/2018] [Indexed: 01/02/2023] Open
Abstract
Background Health systems are recommended to capture routine patient sociodemographic data as a key step in providing equitable person‐centred care. However, collection of this information has the potential to cause harm, especially for vulnerable or potentially disadvantaged patients. Objective To identify harms perceived or experienced by patients, their families, or health‐care providers from collection of sociodemographic information during routine health‐care visits and to identify best practices for when, by whom and how to collect this information. Search Strategy We searched OVID MEDLINE, PubMed “related articles” via NLM and healthevidence.org to the end of January 2018 and assessed reference lists and related citations of included studies. Inclusion Criteria We included studies reporting on harms of collecting patient sociodemographic information in health‐care settings. Data Extraction and Synthesis Data on study characteristics and types of harms were extracted and summarized narratively. Main Results Eighteen studies were included; 13 provided patient perceptions or experiences with the collection of these data and seven studies reported on provider perceptions. Five reported on patient recommendations for collecting sociodemographic information. Patients and providers reported similar potential harms which were grouped into the following themes: altered behaviour which may affect care‐seeking, data misuse or privacy concerns, discomfort, discrimination, offence or negative reactions, and quality of care. Patients suggested that sociodemographic information be collected face to face by a physician. Discussion and Conclusions Overall, patients support the collection of sociodemographic information. However, harms are possible, especially for some population subgroups. Harms may be mitigated by providing a rationale for the collection of this information.
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Affiliation(s)
- Jennifer Petkovic
- Bruyère Research Institute, University of Ottawa, Ottawa, Ontario, Canada
| | - Stephanie L Duench
- Bruyère Research Institute, University of Ottawa, Ottawa, Ontario, Canada
| | - Vivian Welch
- Bruyère Research Institute, University of Ottawa, Ottawa, Ontario, Canada
| | - Tamara Rader
- Canadian Agency for Drugs and Technologies in Health, Ottawa, Ontario, Canada
| | - Alison Jennings
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
| | - Alan J Forster
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.,Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada
| | - Peter Tugwell
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.,Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.,School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada
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46
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Hamil J, Yonek J, Mahmud Y, Kang R, Garrett A, Duckett P, Jean-Jacques M. Community Efforts to Reduce Racial and Ethnic Health Disparities: Challenges and Facilitators Identified by 16 Multistakeholder Alliances. Med Care Res Rev 2018; 77:74-84. [PMID: 29779426 DOI: 10.1177/1077558718776051] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
The Robert Wood Johnson Foundation's Aligning Forces for Quality (AF4Q) program aimed to improve health care quality and reduce racial and ethnic disparities in 16 diverse communities in the United States from 2006 to 2015; yet most communities failed to make substantive progress toward advancing health care equity by the program's end. This qualitative analysis of key stakeholder interviews aims to identify the major contributors to success versus failure in addressing local health disparities during AF4Q and identified five major themes. Three themes highlight challenges related to collecting local data on racial and ethnic health disparities and transitioning from data collection to action. Two themes capture the critical contribution of stakeholder engagement and access to technical expertise to successful efforts. The challenges and facilitators experienced by these 16 AF4Q communities may help inform the disparities reduction efforts of other communities and guide state or federal policies to reduce health disparities.
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Affiliation(s)
- Jaime Hamil
- Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Juliet Yonek
- Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Yasmin Mahmud
- The Pennsylvania State University, University Park, PA, USA
| | - Raymond Kang
- Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Ariane Garrett
- Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Philethea Duckett
- Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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Relevant patient characteristics for guiding tailored integrated diabetes primary care: a systematic review. Prim Health Care Res Dev 2018; 19:424-447. [PMID: 29405097 PMCID: PMC6452927 DOI: 10.1017/s146342361800004x] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/07/2023] Open
Abstract
Aim To identify which patient-related effect modifiers influence the outcomes of integrated care programs for type 2 diabetes in primary care. Background Integrated care is a widespread management strategy for the treatment of type 2 diabetes. However, most integrated care programs are not tailored to patients’ needs, preferences and abilities. There is increasing consensus that such a patient-centered approach could improve the management of type 2 diabetes. Thus far, it remains unclear which patient-related effect modifiers should guide such an approach. Methods PubMed, CINAHL and EMBASE were searched for empirical studies published after 1998. A systematic literature review was conducted according to the PRISMA guidelines. Findings In total, 23 out of 1015 studies were included. A total of 21 studies measured the effects of integrated diabetes care programs on hemoglobin A1c (HbA1c) and three on low-density lipoprotein cholesterol, systolic blood pressure and health-care utilization. In total, 49 patient characteristics were assessed as potential effect modifiers with HbA1c as an outcome, of which 46 were person or health-related and only three were context-related. Younger age, insulin therapy and longer disease duration were associated with higher HbA1c levels in cross-sectional and longitudinal studies. Higher baseline HbA1c was associated with higher HbA1c at follow-up in longitudinal studies. Information on context- and person-related characteristics was limited, but is necessary to help identify the care needs of individual patients and implement an effective integrated type 2 diabetes tailored care program.
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48
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Bonham VL, Umeh NI, Cunningham BA, Abdallah KE, Sellers SL, Cooper LA. Primary Care Physicians' Collection, Comfort, and Use of Race and Ethnicity in Clinical Practice in the United States. Health Equity 2017; 1:118-126. [PMID: 28966994 PMCID: PMC5621603 DOI: 10.1089/heq.2017.0015] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/19/2022] Open
Abstract
Purpose: The clinical utility of race and ethnicity has been debated. It is important to understand if and how race and ethnicity are communicated and collected in clinical settings. We investigated physicians' self-reported methods of collecting a patient's race and ethnicity in the clinical encounter, their comfort with collecting race and ethnicity, and associations with use of race in clinical decision-making. Methods: A national cross-sectional study of 787 clinically active general internists in the United States. Physicians' self-reported comfort with collecting patient race and ethnicity, their collection practices, and use of race in clinical care were assessed. Bivariate and multivariable regression analyses were conducted to examine associations between comfort, collection practices, and use of race. Results: Most physicians asked patients to self-report their race or ethnicity (26.5%) on an intake form or collected this information directly from patients (26.2%). Most physicians were comfortable collecting patient race and ethnicity (84.3%). Physicians who were more comfortable collecting patient race and ethnicity (β=1.65; [95% confidence interval; CI 0.03–3.28]) or who directly collected patients' race and ethnicity (β=1.24 [95% CI 0.07–2.41]) were more likely to use race in clinical decision-making than physicians who were uncomfortable. Conclusions: This study documents variation in physician comfort level and practice patterns regarding patient race and ethnicity data collection. As the U.S. population becomes more diverse, future work should examine how physicians speak about race and ethnicity with patients and their use of race and ethnicity data impact patient–physician relationships, clinical decision-making, and patient outcomes.
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Affiliation(s)
- Vence L Bonham
- Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland
| | - Nkeiruka I Umeh
- Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland.,Albany Medical College, Albany, New York
| | - Brooke A Cunningham
- Department of Family Medicine and Community Health, University of Minnesota Medical School, Minneapolis, Minnesota
| | - Khadijah E Abdallah
- Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland
| | - Sherrill L Sellers
- College of Education, Health and Society, Miami University, Oxford, Ohio
| | - Lisa A Cooper
- Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland
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Schütze H, Jackson Pulver L, Harris M. What factors contribute to the continued low rates of Indigenous status identification in urban general practice? - A mixed-methods multiple site case study. BMC Health Serv Res 2017; 17:95. [PMID: 28143604 PMCID: PMC5282656 DOI: 10.1186/s12913-017-2017-6] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/28/2015] [Accepted: 01/16/2017] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Indigenous peoples experience worse health and die at younger ages than their non-indigenous counterparts. Ethnicity data enables health services to identify inequalities experienced by minority populations and to implement and monitor services specifically targeting them. Despite significant Government intervention, Australia's Indigenous peoples, the Aboriginal and Torres Strait Islander peoples, continue to be under identified in data sets. We explored the barriers to Indigenous status identification in urban general practice in two areas in Sydney. METHODS A mixed-methods multiple-site case study was used, set in urban general practice. Data collection included semi-structured interviews and self-complete questionnaires with 31 general practice staff and practitioners, interviews with three Medicare Local staff, and focus groups with the two local Aboriginal and Torres Strait Islander communities in the study areas. These data were combined with clinical record audit data and Aboriginal unannounced standardised patient visits to participating practices to determine the current barriers to Indigenous status identification in urban general practice. RESULTS Findings can be broadly grouped into three themes: a lack of practitioner/staff understanding on the need to identify Indigenous status or that a problem with identification exists; suboptimal practice systems to identify and/or record patients' Indigenous status; and practice environments that do not promote Indigenous status identification. CONCLUSION Aboriginal and Torres Strait Islander peoples remain under-identified in general practice. There is a need to address the lack of practitioner and staff recognition that a problem with Indigenous status identification exists, along with entrenched attitudes and beliefs and limitations to practice software capabilities. Guidelines recommending Indigenous status identification and Aboriginal and Torres Strait Islander-specific Practice Incentive Payments have had limited impact on Indigenous status identification rates. It is likely that policy change mandating Indigenous status identification and recording in general practice will also be required.
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Affiliation(s)
- Heike Schütze
- School of Health and Society, University of Wollongong, Northfields Avenue, Wollongong, 2522, NSW, Australia.
| | - Lisa Jackson Pulver
- Office of the Pro-Vice Chancellor - Engagement and Aboriginal & Torres Strait Islander Leadership, University of Western Sydney, Locked Bag 1797, Penrith, 2751, NSW, Australia
| | - Mark Harris
- Centre for Primary Health Care and Equity, Level 3, AGSM Building, UNSW Australia, Sydney, 2052, Australia
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50
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Chakkalakal RJ, Fox JP, Green JC, Nunez-Smith M, Nallamothu BK, Hasnain-Wynia R. Hospitalization Rates for Acute Myocardial Infarction Among Asian-American Subgroups: Have We Been Underestimating the Problem? J Immigr Minor Health 2016; 20:20-25. [PMID: 27757693 DOI: 10.1007/s10903-016-0517-9] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
Concerns about the quality of race/ethnicity data collected by hospitals have limited our understanding of healthcare disparities affecting ethnic minorities in the United States. Using data from the New Jersey State Inpatient Databases and the American Community Survey, we calculated age-adjusted AMI hospitalization rates for Asian-American subgroups before (2005-2006) and after (2008-2009) New Jersey hospitals implemented standardized practices to collect more accurate granular race/ethnicity data from patients. Rates were reported per 100,000 persons for Asian Indian, Chinese, Filipino, Japanese, Korean, and Vietnamese subgroups. AMI hospitalization rates increased for all subgroups except Vietnamese following implementation of the New Jersey program; increases were statistically significant for Asian Indian, Chinese, and Korean subgroups. Rates of hospitalization for AMI increased significantly for multiple Asian-American subgroups following implementation of the New Jersey program. National population health metrics for Asian-American subgroups may be prone to significant underestimation without widespread utilization of similar practices.
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Affiliation(s)
- Rosette J Chakkalakal
- Robert Wood Johnson Foundation Clinical Scholars Program, Department of Internal Medicine, Yale University School of Medicine, New Haven, CT, USA.
- Division of General Internal Medicine and Public Health, Department of Internal Medicine, Vanderbilt University Medical Center, 1215 21st Ave South, 6000 Medical Center East, NT, Nashville, TN, 37232-8300, USA.
| | - Justin P Fox
- Robert Wood Johnson Foundation Clinical Scholars Program, Department of Internal Medicine, Yale University School of Medicine, New Haven, CT, USA
| | - Jeremy C Green
- Department of Health Management and Policy, Saint Louis University, St. Louis, MO, USA
| | - Marcella Nunez-Smith
- Robert Wood Johnson Foundation Clinical Scholars Program, Department of Internal Medicine, Yale University School of Medicine, New Haven, CT, USA
| | - Brahmajee K Nallamothu
- Division of Cardiovascular Medicine and Center for Health Outcomes and Policy, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI, USA
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