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1.
Genet Med ; 26(5): 101076, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38258669

RESUMO

PURPOSE: Genome sequencing (GS)-specific diagnostic rates in prospective tightly ascertained exome sequencing (ES)-negative intellectual disability (ID) cohorts have not been reported extensively. METHODS: ES, GS, epigenetic signatures, and long-read sequencing diagnoses were assessed in 74 trios with at least moderate ID. RESULTS: The ES diagnostic yield was 42 of 74 (57%). GS diagnoses were made in 9 of 32 (28%) ES-unresolved families. Repeated ES with a contemporary pipeline on the GS-diagnosed families identified 8 of 9 single-nucleotide variations/copy-number variations undetected in older ES, confirming a GS-unique diagnostic rate of 1 in 32 (3%). Episignatures contributed diagnostic information in 9% with GS corroboration in 1 of 32 (3%) and diagnostic clues in 2 of 32 (6%). A genetic etiology for ID was detected in 51 of 74 (69%) families. Twelve candidate disease genes were identified. Contemporary ES followed by GS cost US$4976 (95% CI: $3704; $6969) per diagnosis and first-line GS at a cost of $7062 (95% CI: $6210; $8475) per diagnosis. CONCLUSION: Performing GS only in ID trios would be cost equivalent to ES if GS were available at $2435, about a 60% reduction from current prices. This study demonstrates that first-line GS achieves higher diagnostic rate than contemporary ES but at a higher cost.


Assuntos
Sequenciamento do Exoma , Exoma , Deficiência Intelectual , Humanos , Deficiência Intelectual/genética , Deficiência Intelectual/diagnóstico , Masculino , Feminino , Exoma/genética , Sequenciamento do Exoma/economia , Estudos de Coortes , Testes Genéticos/economia , Testes Genéticos/métodos , Sequenciamento Completo do Genoma/economia , Criança , Genoma Humano/genética , Variações do Número de Cópias de DNA/genética , Polimorfismo de Nucleotídeo Único/genética , Pré-Escolar
2.
J Public Health Manag Pract ; 29(4): 496-502, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36867496

RESUMO

CONTEXT: Rural public health personnel serve communities that have been particularly susceptible to COVID-19 and yet faced the pandemic with far less well-resourced capacity than their urban counterparts. A critical aspect of addressing local health inequities is access to high-quality population data and the capacity to effectively use data to support decision making. However, much of the data required to investigate inequities are not readily available to rural local health departments and the tools and training to analyze data are often lacking. PROGRAM: The purpose of our effort was to explore rural data challenges related to COVID-19 and provide recommendations for improving rural data access and capacity ahead of future crises. IMPLEMENTATION: We gathered qualitative data in 2 phases, more than 8 months apart, from rural public health practice personnel. Initial data were gathered in October-November 2020 regarding rural public health data needs during the COVID-19 pandemic and then to later identify whether the same findings held true in July 2021 or whether access to and capacity to use data to address the pandemic and related inequities improved as the pandemic progressed. EVALUATION: In our 4-state exploration focused on access and use of data among rural public health systems to promote health equity in the Northwest United States, we found tremendous and ongoing unmet data needs, challenges with communicating data, and a lack of capacity to meet this public health crisis. DISCUSSION: Recommendations for addressing these challenges include increasing dedicated resources specifically to rural public health systems, improving data access and infrastructure, and providing dedicated data-related workforce development.


Assuntos
COVID-19 , Equidade em Saúde , Humanos , População Rural , Saúde Pública , Coleta de Dados , Governo Local , Estudos Transversais , Pesquisa Qualitativa , Confiabilidade dos Dados
3.
Eur J Hum Genet ; 30(10): 1121-1131, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35970915

RESUMO

Whole genome sequencing (WGS) improves Mendelian disorder diagnosis over whole exome sequencing (WES); however, additional diagnostic yields and costs remain undefined. We investigated differences between diagnostic and cost outcomes of WGS and WES in a cohort with suspected Mendelian disorders. WGS was performed in 38 WES-negative families derived from a 64 family Mendelian cohort that previously underwent WES. For new WGS diagnoses, contemporary WES reanalysis determined whether variants were diagnosable by original WES or unique to WGS. Diagnostic rates were estimated for WES and WGS to simulate outcomes if both had been applied to the 64 families. Diagnostic costs were calculated for various genomic testing scenarios. WGS diagnosed 34% (13/38) of WES-negative families. However, contemporary WES reanalysis on average 2 years later would have diagnosed 18% (7/38 families) resulting in a WGS-specific diagnostic yield of 19% (6/31 remaining families). In WES-negative families, the incremental cost per additional diagnosis using WGS following WES reanalysis was AU$36,710 (£19,407;US$23,727) and WGS alone was AU$41,916 (£22,159;US$27,093) compared to WES-reanalysis. When we simulated the use of WGS alone as an initial genomic test, the incremental cost for each additional diagnosis was AU$29,708 (£15,705;US$19,201) whereas contemporary WES followed by WGS was AU$36,710 (£19,407;US$23,727) compared to contemporary WES. Our findings confirm that WGS is the optimal genomic test choice for maximal diagnosis in Mendelian disorders. However, accepting a small reduction in diagnostic yield, WES with subsequent reanalysis confers the lowest costs. Whether WES or WGS is utilised will depend on clinical scenario and local resourcing and availability.


Assuntos
Exoma , Sequência de Bases , Mapeamento Cromossômico , Humanos , Sequenciamento do Exoma , Sequenciamento Completo do Genoma
4.
J Biomed Inform ; 129: 104051, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35318149

RESUMO

BACKGROUND: Rural local health departments (LHDs) lack adequate capacity and funding to effectively make data-driven decisions to support their communities that face greater health disparities compared to urban counterparts. The need, therefore, exists for informatics solutions to support rural LHDs. PURPOSE: We describe the user-centered design (UCD) of SHARE-NW: Solutions in Health Analytics for Rural Equity across the Northwest, a website (sharenw.nwcphp.org) with data visualization dashboards for rural LHD practitioners in Alaska, Idaho, Oregon, and Washington to help them identify health disparities in their jurisdictions. METHODS: In this UCD study guided by Munzner's Nested Model for Visualization Design and Validation, we (1) completed a needs assessment, (2) created and evaluated mockups, and (3) conducted usability testing of a functional alpha testing website. Potential end-users (rural LHD practitioners) and Equity Advisory Committee members (public health experts from state, rural local, and tribal public health agencies) across our four-state catchment area were engaged throughout the website development and testing. We adapted traditional in-person UCD methods to be remote to reach participants across a large geographic area and in rural/frontier areas of Alaska, Idaho, Oregon, and Washington. RESULTS: We recruited participants from all four states to engage in each stage of the project. Needs assessment findings informed the mockup development, and findings from the mockup evaluations informed the development of the functional website. Usability testing of the website overall was positive, with priority usability issues identified. CONCLUSIONS: By applying Munzner's Nested Model and UCD, we could purposefully and intentionally design evidence-based solutions, specifically for rural LHD practitioners. Adaptations of traditional UCD methods were successful and allowed us to reach end-users across a large geographic area. Future work on SHARE-NW will involve the evaluation of the website. We provide insights on our lessons learned to support future public health informatics solution development.


Assuntos
Saúde Pública , Determinantes Sociais da Saúde , Humanos , Prática de Saúde Pública , Washington
5.
J Am Med Inform Assoc ; 28(2): 322-333, 2021 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-32827030

RESUMO

OBJECTIVE: With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. MATERIALS AND METHODS: Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. RESULTS: We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. DISCUSSION: Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. CONCLUSIONS: PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.


Assuntos
Gestão da Informação em Saúde , Registros de Saúde Pessoal , Idoso , Idoso de 80 Anos ou mais , Registros Eletrônicos de Saúde , Emergências , Feminino , Gestão da Informação em Saúde/organização & administração , Humanos , Entrevistas como Assunto , Masculino , Informática Médica , Pessoa de Meia-Idade , Inquéritos e Questionários
6.
J Am Med Inform Assoc ; 26(8-9): 825-834, 2019 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-30990561

RESUMO

OBJECTIVE: Rural public health system leaders struggle to access and use data for understanding local health inequities and to effectively allocate scarce resources to populations in need. This study sought to determine these rural public health system leaders' data access, capacity, and training needs. MATERIALS AND METHODS: We conducted qualitative interviews across Alaska, Idaho, Oregon, and Washington with individuals expected to use population data for analysis or decision-making in rural communities. We used content analysis to identify themes. RESULTS: We identified 2 broad themes: (1) challenges in accessing or using data to monitor and address health disparities and (2) needs for training in data use to address health inequities. Participants faced challenges accessing or using data to address rural disparities due to (a) limited availability or access to data, (b) data quality issues, (c) limited staff with expertise and resources for analyzing data, and (d) the diversity within rural jurisdictions. Participants also expressed opportunities for filling capacity gaps through training-particularly for displaying and communicating data. DISCUSSION: Rural public health system leaders expressed data challenges, many of which can be aided by informatics solutions. These include interoperable, accessible, and usable tools that help capture, access, analyze, and display data to support health equity efforts in rural communities. CONCLUSION: Informatics has the potential to address some of the daunting data-related challenges faced by rural public health system leaders working to enhance health equity. Future research should focus on developing informatics solutions to support data access and use in rural communities.


Assuntos
Coleta de Dados , Disparidades nos Níveis de Saúde , Informática em Saúde Pública , Prática de Saúde Pública , Serviços de Saúde Rural/organização & administração , Alaska , Confiabilidade dos Dados , Humanos , Entrevistas como Assunto , Noroeste dos Estados Unidos , Informática em Saúde Pública/educação , Pesquisa Qualitativa , Saúde da População Rural , Desenvolvimento de Pessoal
7.
J Biomed Inform ; 86: 167-174, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30195086

RESUMO

OBJECTIVE: Health information technology could provide valuable support for inter-professional collaboration to address complex health issues, but current HIT systems do not adequately support such collaboration. Existing theoretical research on supporting collaborative work can help inform the design of collaborative HIT systems. Using the example of supporting collaboration between child development service providers, we describe a deductive approach that leverages concepts from the literature and analyzes qualitative user-needs data to aid in collaborative system design. MATERIALS AND METHODS: We use the Collaboration Space Model to guide the deductive qualitative analysis of interviews focused on the use of information technology to support child development. We deductively analyzed 44 interviews from two separate research initiatives and included data from a wide range of stakeholder groups including parents and various service providers. We summarized the deductively coded interview excerpts using quantitative and qualitative methods. RESULTS: The deductive analysis method provided a rich set of design data, highlighting heterogeneity in work processes, barriers to adequate communication, and gaps in stakeholder knowledge in supporting child development work. DISCUSSION: Deductive qualitative analysis considering constructs from a literature-based model provided useful, actionable data to aid in design. Design implications underscore functions needed to adequately share data across many stakeholders. More work is needed to validate our design implications and to better understand the situations where specific system features would be most useful. CONCLUSIONS: Deductive analysis considering model constructs provides a useful approach to designing collaborative HIT systems, allowing designers to consider both empirical user data and existing knowledge from the literature. This method has the potential to improve designs for collaborative HIT systems.


Assuntos
Desenvolvimento Infantil , Registros Eletrônicos de Saúde , Informática Médica/métodos , Acesso à Informação , Algoritmos , Criança , Pré-Escolar , Comunicação , Comportamento Cooperativo , Coleta de Dados/métodos , Atenção à Saúde , Intervenção Educacional Precoce , Humanos , Programas de Rastreamento/métodos , Pediatria/organização & administração , Atenção Primária à Saúde/organização & administração , Pesquisa Qualitativa , Software , Washington
8.
J Am Med Inform Assoc ; 25(8): 989-999, 2018 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-29726993

RESUMO

Objective: Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods: We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results: FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions: FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.


Assuntos
Cuidadores , Gestão da Informação em Saúde , Registros de Saúde Pessoal , Adulto , Idoso , Idoso de 80 Anos ou mais , Informática Aplicada à Saúde dos Consumidores , Família , Amigos , Humanos , Entrevistas como Assunto , Informática Médica , Pessoa de Meia-Idade , Administração dos Cuidados ao Paciente
9.
Artigo em Inglês | MEDLINE | ID: mdl-29587390

RESUMO

Women living in socioeconomically disadvantaged neighbourhoods are at heightened risk of experiencing psychological stress. Therefore, identifying potential risk factors for stress is important to support positive mental health. A growing body of research has linked sedentary behaviour with mental ill-health (e.g., depression and anxiety); however, little research has specifically investigated potential linkages between sedentary behaviour and stress. Therefore, the aim of this study was to investigate the association between common types of sedentary behaviour and objectively-measured stress (as measured by hair cortisol levels) amongst women living in socioeconomically disadvantaged neighbourhoods. During 2012-2013, 72 women (aged 18-46 years) living in socioeconomically disadvantaged neighbourhoods self-reported sedentary behaviour (TV viewing, computer use, overall sitting time) and provided hair samples. Hair cortisol levels were measured using enzyme-linked immunosorbent assay. Linear regression models examined cross-sectional associations between sedentary behaviour and hair cortisol levels. There was no association between any type of sedentary behaviour (TV viewing, computer use, or overall sitting time) and hair cortisol levels in either crude or adjusted models. Sedentary behaviour may not be linked to hair cortisol level (stress) in women living in socioeconomically disadvantaged neighbourhoods. Further studies utilising objective measures of both sedentary behaviour and stress are required to confirm these findings.


Assuntos
Cabelo/química , Hidrocortisona/análise , Comportamento Sedentário , Populações Vulneráveis/psicologia , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Modelos Lineares , Pessoa de Meia-Idade , Autorrelato , Estresse Psicológico , Adulto Jovem
10.
Genet Med ; 20(12): 1564-1574, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29595814

RESUMO

PURPOSE: Whole-exome sequencing (WES) has revolutionized Mendelian diagnostics, however, there is no consensus on the timing of data review in undiagnosed individuals and only preliminary data on the cost-effectiveness of this technology. We aimed to assess the utility of WES data reanalysis for diagnosis in Mendelian disorders and to analyze the cost-effectiveness of this technology compared with a traditional diagnostic pathway. METHODS: WES was applied to a cohort of 54 patients from 37 families with a variety of Mendelian disorders to identify the genetic etiology. Reanalysis was performed after 12 months with an improved WES diagnostic pipeline. A comparison was made between costs of a modeled WES pathway and a traditional diagnostic pathway in a cohort with intellectual disability (ID). RESULTS: Reanalysis of WES data at 12 months improved diagnostic success from 30 to 41% due to interim publication of disease genes, expanded phenotype data from referrer, and an improved bioinformatics pipeline. Cost analysis on the ID cohort showed average cost savings of US$586 (AU$782) for each additional diagnosis. CONCLUSION: Early application of WES in Mendelian disorders is cost-effective and reanalysis of an undiagnosed individual at a 12-month time point increases total diagnoses by 11%.


Assuntos
Sequenciamento do Exoma/tendências , Exoma/genética , Doenças Genéticas Inatas/genética , Testes Genéticos/tendências , Deficiência Intelectual/genética , Biologia Computacional , Análise Custo-Benefício/economia , Feminino , Doenças Genéticas Inatas/diagnóstico , Doenças Genéticas Inatas/economia , Testes Genéticos/economia , Humanos , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/patologia , Masculino , Fenótipo , Sequenciamento do Exoma/economia
11.
Stress ; 19(2): 158-67, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27023344

RESUMO

Disadvantaged communities provide adverse psychosocial exposures that have been linked to high levels of stress, and this may provide one explanatory pathway linking socioeconomic disadvantage to obesity. This study used hair cortisol analysis to quantify associations between stress and body mass index (BMI), and between hair cortisol and perceived psychological stress levels, in women and children living in socioeconomically disadvantaged neighborhoods. Participants were a volunteer sample of 70 women from the Resilience for Eating and Activity Despite Inequality study, including 30 maternal-child pairs. Women self-reported body weight, height and perceived psychological stress using the Perceived Stress Scale (PSS), and provided hair samples for themselves and their child. Children's body weight and height were measured. Following extraction, hair cortisol levels were measured using enzyme-linked immunosorbent assay. Multiple linear regression models examined associations between stress and BMI, and between hair cortisol and perceived stress levels in women and children. Women's hair cortisol levels were not associated with their BMI or PSS scores. Women's PSS scores were positively associated with their BMI (p = 0.015). Within maternal-child pairs, mothers and children's hair cortisol levels were strongly positively associated (p = 0.006). Maternal hair cortisol levels and PSS scores were unrelated to their child's zBMI. Children's hair cortisol levels were not associated with their zBMI or with their mother's PSS score. Findings suggest that cortisol-based and perceived psychological measures of stress may be distinct among women and children living in disadvantaged neighborhoods. Perceived psychological measures may be more important predictors of weight-related risk.


Assuntos
Índice de Massa Corporal , Cabelo/química , Hidrocortisona/análise , Percepção , Estresse Psicológico/metabolismo , Adolescente , Adulto , Criança , Feminino , Humanos , Pessoa de Meia-Idade , Mães , Obesidade , Características de Residência , Fatores Socioeconômicos , Populações Vulneráveis , Adulto Jovem
12.
Stud Health Technol Inform ; 216: 380-5, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26262076

RESUMO

OBJECTIVES: Local Health Departments (LHDs) are a key source of health promotion information. For ethnically and culturally diverse communities, it becomes important to provide minorities with language appropriate health information. This project sought to assess the availability of multilingual health promotion materials on LHD websites in Washington State (WA), USA. METHODS: We performed a cross-sectional study of all 34 LHD websites in WA. We collected and classified health promotion documents available to the public, specifically, whether translated versions were available. We also assessed the extent of document sharing between LHDs. RESULTS: We identified 1,624 documents across 34 LHDs. Topics most frequently covered were communicable diseases and emergency preparedness. Fewer than 10% of documents were available in non-English languages. We found little evidence of document sharing between LHDs; only 5% of all documents were shared between LHDs. CONCLUSIONS: WA LHDs provide a variety of health promotion materials for the public, but few multilingual materials are available online. New technologies for facilitating document sharing and machine translation may improve the present landscape.


Assuntos
Informação de Saúde ao Consumidor/estatística & dados numéricos , Promoção da Saúde/provisão & distribuição , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Internet/provisão & distribuição , Multilinguismo , Tradução , Estudos Transversais , Governo Local , Sistemas On-Line , Administração em Saúde Pública/estatística & dados numéricos , Programas Médicos Regionais , Washington
13.
Artigo em Inglês | MEDLINE | ID: mdl-26262280

RESUMO

The personal health information management (PHIM) of older adults is poorly understood. We describe initial results from the SOARING (Studying Older Adults & Researching Information Needs and Goals) study at the University of Washington, a participatory design investigation of PHIM in older adults. We conducted in-depth interviews with older adults (n=71) living in a variety of residential settings. A surprising 21% of participants reported using patient portals. Another 17% of participants reported prior use or anticipated use of portals in the future. We identified preferences and needs as well as barriers and facilitators to portal use. Our findings indicate that patient portals designed to target the specific needs for older adults can suport PHIM. We offer recommendations for expanded research.


Assuntos
Registros de Saúde Pessoal , Idoso , Idoso de 80 Anos ou mais , Alfabetização Digital , Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade
14.
J Biomed Inform ; 53: 136-46, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25445922

RESUMO

OBJECTIVE: Provide a detailed understanding of the information workflow processes related to translating health promotion materials for limited English proficiency individuals in order to inform the design of context-driven machine translation (MT) tools for public health (PH). MATERIALS AND METHODS: We applied a cognitive work analysis framework to investigate the translation information workflow processes of two large health departments in Washington State. Researchers conducted interviews, performed a task analysis, and validated results with PH professionals to model translation workflow and identify functional requirements for a translation system for PH. RESULTS: The study resulted in a detailed description of work related to translation of PH materials, an information workflow diagram, and a description of attitudes towards MT technology. We identified a number of themes that hold design implications for incorporating MT in PH translation practice. A PH translation tool prototype was designed based on these findings. DISCUSSION: This study underscores the importance of understanding the work context and information workflow for which systems will be designed. Based on themes and translation information workflow processes, we identified key design guidelines for incorporating MT into PH translation work. Primary amongst these is that MT should be followed by human review for translations to be of high quality and for the technology to be adopted into practice. CONCLUSION: The time and costs of creating multilingual health promotion materials are barriers to translation. PH personnel were interested in MT's potential to improve access to low-cost translated PH materials, but expressed concerns about ensuring quality. We outline design considerations and a potential machine translation tool to best fit MT systems into PH practice.


Assuntos
Educação em Saúde/métodos , Prática de Saúde Pública , Tradução , Fluxo de Trabalho , Acesso à Informação , Algoritmos , Comunicação , Processamento Eletrônico de Dados , Grupos Focais , Promoção da Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Idioma , Aprendizado de Máquina , Administração em Saúde Pública , Informática em Saúde Pública , Garantia da Qualidade dos Cuidados de Saúde , Washington
15.
J Public Health Manag Pract ; 20(5): 523-9, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24084391

RESUMO

CONTEXT: Most local public health departments serve limited English proficiency groups but lack sufficient resources to translate the health promotion materials that they produce into different languages. Machine translation (MT) with human postediting could fill this gap and work toward decreasing health disparities among non-English speakers. OBJECTIVES: (1) To identify the time and costs associated with human translation (HT) of public health documents, (2) determine the time necessary for human postediting of MT, and (3) compare the quality of postedited MT and HT. DESIGN: A quality comparison of 25 MT and HT documents was performed with public health translators. The public health professionals involved were queried about the workflow, costs, and time for HT of 11 English public health documents over a 20-month period. Three recently translated documents of similar size and topic were then machine translated, the time for human postediting was recorded, and a blind quality analysis was performed. SETTING: Seattle/King County, Washington. PARTICIPANTS: Public health professionals. MAIN OUTCOME MEASURES: (1) Estimated times for various HT tasks; (2) observed postediting times for MT documents; (3) actual costs for HT; and (4) comparison of quality ratings for HT and MT. RESULTS: Human translation via local health department methods took 17 hours to 6 days. While HT postediting words per minute ranged from 1.58 to 5.88, MT plus human postediting words per minute ranged from 10 to 30. The cost of HT ranged from $130 to $1220; MT required no additional costs. A quality comparison by bilingual public health professionals showed that MT and HT were equivalently preferred. CONCLUSIONS: MT with human postediting can reduce the time and costs of translating public health materials while maintaining quality similar to HT. In conjunction with postediting, MT could greatly improve the availability of multilingual public health materials.


Assuntos
Processamento Eletrônico de Dados , Promoção da Saúde , Informática em Saúde Pública , Prática de Saúde Pública , Controle de Qualidade , Tradução , Acesso à Informação , Processamento Eletrônico de Dados/economia , Humanos , Idioma , Aprendizado de Máquina/economia , Informática em Saúde Pública/economia , Fatores de Tempo
16.
Stud Health Technol Inform ; 192: 1209, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23920983

RESUMO

Limited English proficiency (LEP) leads to disparities in health and health care. Although the LEP population in the US is growing and federal regulations require availability of translated health promotion materials, availability of these materials is lacking, partially due to the costs and time required to produce high quality translations. We conducted semi-structured interviews with employees involved in the translation process at three local health districts (LHDs) in Washington State to explore the potential for novel technologies to assist in the creation of multilingual health promotion materials. We generated a translation workflow diagram and analyzed key themes that affected the translation process. We also explored employees' opinions regarding electronic document exchange and machine translation technology (MT). Overall, public health employees were open to the incorporation of information technologies to speed the translation and dissemination of multilingual public health materials if quality could be assured.


Assuntos
Atitude do Pessoal de Saúde , Promoção da Saúde/métodos , Disseminação de Informação/métodos , Governo Local , Administração em Saúde Pública/métodos , Tradução , Fluxo de Trabalho , Avaliação das Necessidades , Estados Unidos
17.
Disaster Med Public Health Prep ; 7(2): 146-52, 2013 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24618165

RESUMO

OBJECTIVE: We developed and validated a user-centered information system to support the local planning of public health continuity of operations for the Community Health Services Division, Public Health - Seattle & King County, Washington. METHODS: The Continuity of Operations Data Analysis (CODA) system was designed as a prototype developed using requirements identified through participatory design. CODA uses open-source software that links personnel contact and licensing information with needed skills and clinic locations for 821 employees at 14 public health clinics in Seattle and King County. Using a web-based interface, CODA can visualize locations of personnel in relationship to clinics to assist clinic managers in allocating public health personnel and resources under dynamic conditions. RESULTS: Based on user input, the CODA prototype was designed as a low-cost, user-friendly system to inventory and manage public health resources. In emergency conditions, the system can run on a stand-alone battery-powered laptop computer. A formative evaluation by managers of multiple public health centers confirmed the prototype design's usefulness. Emergency management administrators also provided positive feedback about the system during a separate demonstration. CONCLUSIONS: Validation of the CODA information design prototype by public health managers and emergency management administrators demonstrates the potential usefulness of building a resource management system using open-source technologies and participatory design principles.


Assuntos
Comunicação , Serviços de Saúde Comunitária/organização & administração , Planejamento em Desastres/organização & administração , Administração em Saúde Pública , Alocação de Recursos/organização & administração , Pessoal de Saúde/organização & administração , Humanos , Sistemas de Informação , Washington
18.
AMIA Annu Symp Proc ; 2013: 939-45, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24551385

RESUMO

Despite the growing limited English proficiency (LEP) population in the US, and federal regulations requiring multilingual health information be available for LEP individuals, there is a lack of available high quality multilingual health promotion materials. The costs and personnel time associated with creating high quality translations serve as barriers to their creation, especially in resource limited public health settings. To explore the potential adoption of novel machine translation and document dissemination technologies for improving the creation and sharing of translated public health materials, we interviewed key health department personnel in Washington State. We analyzed translation workflow, elucidated key themes regarding public health translation work, and assessed attitudes towards electronic document exchange and machine translation. Public health personnel expressed the need for human quality assurance and oversight, but appreciated the potential of novel information technologies to assist in the production and dissemination of translated materials for public health practice.


Assuntos
Administração em Saúde Pública , Informática em Saúde Pública/organização & administração , Tradução , Fluxo de Trabalho , Processamento Eletrônico de Dados , Necessidades e Demandas de Serviços de Saúde , Humanos , Entrevistas como Assunto , Multilinguismo , Garantia da Qualidade dos Cuidados de Saúde , Análise e Desempenho de Tarefas , Washington , Recursos Humanos
19.
AMIA Annu Symp Proc ; 2013: 1378-85, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24551414

RESUMO

Limited English proficiency (LEP), defined as a limited ability to read, speak, write, or understand English, is associated with health disparities. Despite federal and state requirements to translate health information, the vast majority of health materials are solely available in English. This project investigates barriers to translation of health information and explores new technologies to improve access to multilingual public health materials. We surveyed all 77 local health departments (LHDs) in the Northwest about translation needs, practices, barriers and attitudes towards machine translation (MT). We received 67 responses from 45 LHDs. Translation of health materials is the principle strategy used by LHDs to reach LEP populations. Cost and access to qualified translators are principle barriers to producing multilingual materials. Thirteen LHDs have used online MT tools. Many respondents expressed concerns about the accuracy of MT. Overall, respondents were positive about its potential use, if low costs and quality could be assured.


Assuntos
Computadores , Informação de Saúde ao Consumidor , Multilinguismo , Tradução , Atitude do Pessoal de Saúde , Coleta de Dados , Humanos , Governo Local , Noroeste dos Estados Unidos , Administração em Saúde Pública
20.
J Med Internet Res ; 14(3): e79, 2012 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-22664384

RESUMO

BACKGROUND: Effective communication of public health messages is a key strategy for health promotion by public health agencies. Creating effective health promotion materials requires careful message design and feedback from representatives of target populations. This is particularly true when the target audiences are hard to reach as limited English proficiency groups. Traditional methods of soliciting feedback--such as focus groups and convenience sample interviews--are expensive and time consuming. As a result, adequate feedback from target populations is often insufficient due to the time and resource constraints characteristic to public health. OBJECTIVE: To describe a pilot study investigating the use of crowdsourcing technology as a method to gather rapid and relevant feedback on the design of health promotion messages for oral health. Our goal was to better describe the demographics of participants responding to a crowdsourcing survey and to test whether crowdsourcing could be used to gather feedback from English-speaking and Spanish-speaking participants in a short period of time and at relatively low costs. METHODS: We developed health promotion materials on pediatric dental health issues in four different formats and in two languages (English and Spanish). We then designed an online survey to elicit feedback on format preferences and made it available in both languages via the Amazon Mechanical Turk crowdsourcing platform. RESULTS: We surveyed 236 native English-speaking and 163 native Spanish-speaking participants in less than 12 days, at a cost of US $374. Overall, Spanish-speaking participants originated from a wider distribution of countries than the overall Latino population in the United States. Most participants were in the 18- to 29-year age range and had some college or graduate education. Participants provided valuable input for the health promotion material design. CONCLUSIONS: Our results indicate that crowdsourcing can be an effective method for recruiting and gaining feedback from English-speaking and Spanish-speaking people. Compared with traditional methods, crowdsourcing has the potential to reach more diverse populations than convenience sampling, while substantially reducing the time and cost of gathering participant feedback. More widespread adoption of this method could streamline the development of effective health promotion materials in multiple languages.


Assuntos
Serviços Contratados/métodos , Promoção da Saúde , Multilinguismo , Saúde Pública , Adolescente , Adulto , Serviços de Saúde Bucal , Grupos Focais , Humanos , Saúde Bucal , Projetos Piloto , Estados Unidos , Adulto Jovem
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