Bridging Culture and Language: Encouraging Bilingual/Multicultural Individuals to Act as Information Navigators for Their Loved-Ones and Communities during the COVID-19 Pandemic.

Linguistically diverse communities face barriers to receiving appropriate health information. COVID-19 exacerbated these health-communication inequities. University of Washington researchers surveyed bilingual staff, students, and medical interpreters - desiring training to become effective communicators of COVID-19 information to their social networks and language communities. In response, the COVID-19 Information Navigator Training was developed and pre-tested with professional networks and members of the target audience. The final training comprised three interactive modules and short quizzes. Evaluation surveys measured Information Navigators' confidence in providing COVID-19 information to their social networks. Surveys included questions on the participants' language or cultural community, the perceived value of the training, and their ability to communicate COVID-19 information. Among 393 participants who enrolled in the training, 284 completed the survey. Significant differences in confidence before and after the course were found in detecting COVID misinformation in the news and social media (pre-course mean: 3.83, post-course mean: 4.63; absolute mean difference was 0.82 points higher in the post-evaluation on the 5-point likert scale, 95% CI: 0.70-0.93, p < .01). Training multicultural volunteers to disseminate information to their social networks is a promising strategy for reaching linguistically diverse communities with up-to-date information during health emergencies.

Trends in and Effectiveness of Infographics for Health Communication: A Scoping Review.

Health infographics are often used to improve knowledge or change behaviors. However, a systematic understanding of the current landscape and evidence of health infographics is lacking. The objective of this study was to explore trends in health-related infographics research and health infographic effectiveness. We conducted a scoping review of peer-reviewed publications describing health-related infographic development, using health and computer science databases. We extracted information from included articles to understand current trends in health-related infographics research and design elements that support infographic effectiveness. A total of 135 articles met our inclusion criteria. There was an increase in health infographics publications over time and definitions of infographics, when present, varied in scope and content. Out of 81 studies that evaluated the infographics' effectiveness in improving knowledge or changing attitudes or behaviors, 71 (87.7%) reported that infographics were effective. Infographics were often preferred over another medium (e.g. text). Overall, there is increasing interest in research regarding health-related infographics. While most effectiveness studies found that infographics helped improve knowledge or change behaviors, many studies lacked rigor in study design or reporting study methods. We did not find articles that focused on credibility or development of infographics tools - these are avenues for future research.

Rural Public Health Data Challenges During the COVID-19 Pandemic: The Case for Building Better Systems Ahead of a Public Health Crisis.

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.

Supporting rural public health practice to address local-level social determinants of health across Northwest states: Development of an interactive visualization dashboard.

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.

The use of visual methods to support communication with older adults with cognitive impairment: A scoping review.

Older adults with cognitive impairment often face difficulties with comprehension and communication, which can impact other cognitive processes such as decision-making. This scoping review investigates how visual methods can support older adults with cognitive impairment. The review involved querying four databases. From these databases, eleven articles fit inclusion criteria. This paper examines the purposes, use contexts, types, and effectiveness of the visual methods described in each study. The two major use contexts were elicitation of thoughts, feelings, and preferences in everyday life and health/healthcare related uses. Studies that used visual methods for eliciting preferences generally employed static visualizations. Health-related contexts employed more complex and interactive visualizations. Three studies used visual tools to support older adults in understanding; six, communication; and three, decision-making. None addressed all three outcomes of interest. This study provides recommendations and future directions for visual communication research with older adults with cognitive impairment.

ATAD3 gene cluster deletions cause cerebellar dysfunction associated with altered mitochondrial DNA and cholesterol metabolism.

Although mitochondrial disorders are clinically heterogeneous, they frequently involve the central nervous system and are among the most common neurogenetic disorders. Identifying the causal genes has benefited enormously from advances in high-throughput sequencing technologies; however, once the defect is known, researchers face the challenge of deciphering the underlying disease mechanism. Here we characterize large biallelic deletions in the region encoding the ATAD3C, ATAD3B and ATAD3A genes. Although high homology complicates genomic analysis of the ATAD3 defects, they can be identified by targeted analysis of standard single nucleotide polymorphism array and whole exome sequencing data. We report deletions that generate chimeric ATAD3B/ATAD3A fusion genes in individuals from four unrelated families with fatal congenital pontocerebellar hypoplasia, whereas a case with genomic rearrangements affecting the ATAD3C/ATAD3B genes on one allele and ATAD3B/ATAD3A genes on the other displays later-onset encephalopathy with cerebellar atrophy, ataxia and dystonia. Fibroblasts from affected individuals display mitochondrial DNA abnormalities, associated with multiple indicators of altered cholesterol metabolism. Moreover, drug-induced perturbations of cholesterol homeostasis cause mitochondrial DNA disorganization in control cells, while mitochondrial DNA aggregation in the genetic cholesterol trafficking disorder Niemann-Pick type C disease further corroborates the interdependence of mitochondrial DNA organization and cholesterol. These data demonstrate the integration of mitochondria in cellular cholesterol homeostasis, in which ATAD3 plays a critical role. The dual problem of perturbed cholesterol metabolism and mitochondrial dysfunction could be widespread in neurological and neurodegenerative diseases.

The use of model constructs to design collaborative health information technologies: A case study to support child development.

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.

Development of machine translation technology for assisting health communication: A systematic review.

OBJECTIVES: To (1) characterize how machine translation (MT) is being developed to overcome language barriers in health settings; and (2) based on evaluations presented in the literature, determine which MT approaches show evidence of promise and what steps need to be taken to encourage adoption of MT technologies in health settings. MATERIALS & METHODS: We performed a systematic literature search covering 2006-2016 in major health, engineering, and computer science databases. After removing duplicates, two levels of screening identified 27 articles for full text review and analysis. Our review and qualitative analysis covered application setting, target users, underlying technology, whether MT was used in isolation or in combination with human editing, languages tested, evaluation methods, findings, and identified gaps. RESULTS: Of 27 studies, a majority focused on MT systems for use in clinical settings (n = 18), and eight of these involved speech-based MT systems for facilitating patient-provider communications. Text-based MT systems (n = 19) aimed at generating a range of multilingual health materials. Almost a third of all studies (n = 8) pointed to MT's potential as a starting point before human input. Studies employed a variety of human and automatic MT evaluation methods. In comparison studies, statistical machine translation (SMT) systems were more accurate than rule-based systems when large corpora were available. For a variety of systems, performance was best for translations of simple, less technical sentences and from English to Western European languages. Only one system has been fully deployed. CONCLUSIONS: MT is currently being developed primarily through pilot studies to improve multilingual communication in health settings and to increase access to health resources for a variety of languages. However, continued concerns about accuracy limit the deployment of MT systems in these settings. The variety of piloted systems and the lack of shared evaluation criteria will likely continue to impede adoption in health settings, where excellent accuracy and a strong evidence base are critical. Greater translation accuracy and use of standard evaluation criteria would encourage deployment of MT into health settings. For now, the literature points to using MT in health communication as an initial step to be followed by human correction.

A novel depth estimation algorithm of chest compression for feedback of high-quality cardiopulmonary resuscitation based on a smartwatch.

INTRODUCTION: High-quality cardiopulmonary resuscitation (CPR) is a key factor affecting cardiac arrest survival. Accurate monitoring and real-time feedback are emphasized to improve CPR quality. The purpose of this study was to develop and validate a novel depth estimation algorithm based on a smartwatch equipped with a built-in accelerometer for feedback instructions during CPR. METHODS: For data collection and model building, researchers wore an Android Wear smartwatch and performed chest compression-only CPR on a Resusci Anne QCPR training manikin. We developed an algorithm based on the assumptions that (1) maximal acceleration measured by the smartwatch accelerometer and the chest compression depth (CCD) are positively correlated and (2) the magnitude of acceleration at a specific time point and interval is correlated with its neighboring points. We defined a statistic value M as a function of time and the magnitude of maximal acceleration. We labeled and processed collected data and determined the relationship between M value, compression rate and CCD. We built a model accordingly, and developed a smartwatch app capable of detecting CCD. For validation, researchers wore a smartwatch with the preinstalled app and performed chest compression-only CPR on the manikin at target sessions. We compared the CCD results given by the smartwatch and the reference using the Wilcoxon Signed Rank Test (WSRT), and used Bland-Altman (BA) analysis to assess the agreement between the two methods. RESULTS: We analyzed a total of 3978 compressions that covered the target rate of 80-140/min and CCD of 4-7 cm. WSRT showed that there was no significant difference between the two methods (P = 0.084). By BA analysis the mean of differences was 0.003 and the bias between the two methods was not significant (95% CI: -0.079 to 0.085). CONCLUSION: Our study indicates that the algorithm developed for estimating CCD based on a smartwatch with a built-in accelerometer is promising. Further studies will be conducted to evaluate its application for CPR training and clinical practice.

Protocol: simulation training to improve 9-1-1 dispatcher identification of cardiac arrest.

BACKGROUND: 9-1-1 dispatchers are often the first contact for bystanders witnessing an out-of-hospital cardiac arrest. In the time before Emergency Medical Services arrives, dispatcher identification of the need for, and provision of Telephone-CPR (T-CPR) can improve survival. Our study aims to evaluate the use of phone-based standardized patient simulation training to improve identification of the need for T-CPR and shorten time to start of T-CPR instructions. METHODS/DESIGN: The STAT-911 study is a randomized controlled trial. We will recruit 160 dispatchers from 9-1-1 call-centers in the Pacific Northwest; they are randomized to an intervention or control group. Intervention participants complete four telephone simulation training sessions over 6-8 months. Training sessions consist of three mock 9-1-1 calls, with a standardized patient playing a caller witnessing a medical emergency. After the mock calls, an instructor who has been listening in and scoring the dispatcher's call management, connects to the dispatcher and provides feedback on select call processing skills. After the last training session, all participants complete the simulation test: a call session that includes two mock 9-1-1 calls of medium complexity. During the study, audio from all actual cardiac arrest calls handled by the dispatchers will be collected. All dispatchers complete a baseline survey, and after the intervention, a follow-up survey to measure confidence. Primary outcomes are proportion of calls where dispatchers identify the need for T-CPR, and time to start of T-CPR, assessed by comparing performance on two calls in the simulation test. Secondary outcomes are proportion of actual cardiac arrest calls in which dispatchers identify the need for T-CPR and time to start of T-CPR; performance on call-taking skills during the simulation test; self-reported confidence in the baseline and follow-up surveys; and calculated costs of the intervention training sessions and projected costs for field implementation of training sessions. DISCUSSION: The STAT-911 study will evaluate if over-the-phone simulation training with standardized patients can improve 9-1-1 dispatchers' ability identify the need for, and promptly begin T-CPR. Furthermore, it will advance knowledge on the effectiveness of simulation training for health services phone-operators interacting with clients, patients, or bystanders in diagnosis, triage, and treatment decisions. TRIAL REGISTRATION: ClinicalTrials.gov REGISTRATION NUMBER: NCT01972087 . Registered 23 October 2013.

Genetics of dementia.

25% of all people aged 55 years and older have a family history of dementia. For most, the family history is due to genetically complex disease, where many genetic variations of small effect interact to increase risk of dementia. The lifetime risk of dementia for these families is about 20%, compared with 10% in the general population. A small proportion of families have an autosomal dominant family history of early-onset dementia, which is often due to mendelian disease, caused by a mutation in one of the dementia genes. Each family member has a 50% chance of inheriting the mutation, which confers a lifetime dementia risk of over 95%. In this Review, we focus on the evidence for, and the approach to, genetic testing in Alzheimer's disease (APP, PSEN1, and PSEN2 genes), frontotemporal dementia (MAPT, GRN, C9ORF72, and other genes), and other familial dementias. We conclude by discussing the practical aspects of genetic counselling.

Modeling workflow to design machine translation applications for public health practice.

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.

Noonan syndrome.

Noonan syndrome is a common autosomal dominant condition, readily recognisable in childhood. It is characterised by a pattern of typical facial dysmorphism and malformations including congenital cardiac defects, short stature, abnormal chest shape, broad or webbed neck, and a variable learning disability. Mildly affected adults may not be diagnosed until the birth of a more obviously affected child. The phenotype is highly variable. Important progress in understanding the molecular basis of this and other related conditions was made in 2001 when germline mutations in the PTPN11 gene were found to account for ∼50% of cases. Since then, mutations in additional genes in the rat sarcoma (RAS) pathway have been identified in a proportion of the remainder. Molecular confirmation of diagnosis is now possible for many families and has become increasingly important in guiding management. Increased awareness by paediatricians will lead to earlier diagnosis, and provide patients and their families with accurate genetic counselling, including options when planning pregnancy.

The use of social networking sites for public health practice and research: a systematic review.

BACKGROUND: Social networking sites (SNSs) have the potential to increase the reach and efficiency of essential public health services, such as surveillance, research, and communication. OBJECTIVE: The objective of this study was to conduct a systematic literature review to identify the use of SNSs for public health research and practice and to identify existing knowledge gaps. METHODS: We performed a systematic literature review of articles related to public health and SNSs using PubMed, EMBASE, and CINAHL to search for peer-reviewed publications describing the use of SNSs for public health research and practice. We also conducted manual searches of relevant publications. Each publication was independently reviewed by 2 researchers for inclusion and extracted relevant study data. RESULTS: A total of 73 articles met our inclusion criteria. Most articles (n=50) were published in the final 2 years covered by our search. In all, 58 articles were in the domain of public health research and 15 were in public health practice. Only 1 study was conducted in a low-income country. Most articles (63/73, 86%) described observational studies involving users or usages of SNSs; only 5 studies involved randomized controlled trials. A large proportion (43/73, 59%) of the identified studies included populations considered hard to reach, such as young individuals, adolescents, and individuals at risk of sexually transmitted diseases or alcohol and substance abuse. Few articles (2/73, 3%) described using the multidirectional communication potential of SNSs to engage study populations. CONCLUSIONS: The number of publications about public health uses for SNSs has been steadily increasing in the past 5 years. With few exceptions, the literature largely consists of observational studies describing users and usages of SNSs regarding topics of public health interest. More studies that fully exploit the communication tools embedded in SNSs and study their potential to produce significant effects in the overall population's health are needed.

Participatory design of an integrated information system design to support public health nurses and nurse managers.

OBJECTIVES: The objectives of the study were to use persona-driven and scenario-based design methods to create a conceptual information system design to support public health nursing. DESIGN AND SAMPLE: We enrolled 19 participants from two local health departments to conduct an information needs assessment, create a conceptual design, and conduct a preliminary design validation. MEASURES: Interviews and thematic analysis were used to characterize information needs and solicit design recommendations from participants. Personas were constructed from participant background information, and scenario-based design was used to create a conceptual information system design. Two focus groups were conducted as a first iteration validation of information needs, personas, and scenarios. RESULTS: Eighty-nine information needs were identified. Two personas and 89 scenarios were created. Public health nurses and nurse managers confirmed the accuracy of information needs, personas, scenarios, and the perceived usefulness of proposed features of the conceptual design. Design artifacts were modified based on focus group results. CONCLUSION: Persona-driven design and scenario-based design are feasible methods to design for common work activities in different local health departments. Public health nurses and nurse managers should be engaged in the design of systems that support their work.

A comparison of human and machine translation of health promotion materials for public health practice: time, costs, and quality.

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.

The Solutions in Health Analytics for Rural Equity Across the Northwest (SHARE-NW) Dashboard for Health Equity in Rural Public Health: Usability Evaluation.

BACKGROUND: Given the dearth of resources to support rural public health practice, the solutions in health analytics for rural equity across the northwest dashboard (SHAREdash) was created to support rural county public health departments in northwestern United States with accessible and relevant data to identify and address health disparities in their jurisdictions. To ensure the development of useful dashboards, assessment of usability should occur at multiple stages throughout the system development life cycle. SHAREdash was refined via user-centered design methods, and upon completion, it is critical to evaluate the usability of SHAREdash. OBJECTIVE: This study aims to evaluate the usability of SHAREdash based on the system development lifecycle stage 3 evaluation goals of efficiency, satisfaction, and validity. METHODS: Public health professionals from rural health departments from Washington, Idaho, Oregon, and Alaska were enrolled in the usability study from January to April 2022. The web-based evaluation consisted of 2 think-aloud tasks and a semistructured qualitative interview. Think-aloud tasks assessed efficiency and effectiveness, and the interview investigated satisfaction and overall usability. Verbatim transcripts from the tasks and interviews were analyzed using directed content analysis. RESULTS: Of the 9 participants, all were female and most worked at a local health department (7/9, 78%). A mean of 10.1 (SD 1.4) clicks for task 1 (could be completed in 7 clicks) and 11.4 (SD 2.0) clicks for task 2 (could be completed in 9 clicks) were recorded. For both tasks, most participants required no prompting-89% (n=8) participants for task 1 and 67% (n=6) participants for task 2, respectively. For effectiveness, all participants were able to complete each task accurately and comprehensively. Overall, the participants were highly satisfied with the dashboard with everyone remarking on the utility of using it to support their work, particularly to compare their jurisdiction to others. Finally, half of the participants stated that the ability to share the graphs from the dashboard would be "extremely useful" for their work. The only aspect of the dashboard cited as problematic is the amount of missing data that was present, which was a constraint of the data available about rural jurisdictions. CONCLUSIONS: Think-aloud tasks showed that the SHAREdash allows users to complete tasks efficiently. Overall, participants reported being very satisfied with the dashboard and provided multiple ways they planned to use it to support their work. The main usability issue identified was the lack of available data indicating the importance of addressing the ongoing issues of missing and fragmented public health data, particularly for rural communities.

Patients with Heart Failure: Internet Use and Mobile Health Perceptions.

BACKGROUND: Heart failure is a complex clinical syndrome noted on approximately 1 in 8 death certificates in the United States. Vital to reducing complications of heart failure and preventing hospital readmissions is adherence to heart failure self-care routines. Mobile health offers promising opportunities for enhancing self-care behaviors by facilitating tracking and timely reminders. OBJECTIVE: We sought to investigate three characteristics of heart failure patients with respect to their heart failure self-care behaviors: (1) internet use to search for heart failure information; (2) familiarity with mobile health apps and devices; and (3) perceptions of using activity trackers or smartwatches to aid in their heart failure self-care. METHODS: Forty-nine heart failure patients were asked about their internet and mobile health usage. The structured interview included questions adapted from the Health Information National Trends Survey. RESULTS: Over 50% of the patients had utilized the internet to search for heart failure information in the past 12 months, experience using health-related apps, and thoughts that an activity tracker or smartwatch could help them manage heart failure. Qualitative analysis of the interviews revealed six themes: trust in their physicians, alternatives to mobile health apps, lack of need for mobile health devices, financial barriers to activity tracker and smartwatch ownership, benefits of tracking and reminders, and uncertainty of their potential due to lack of knowledge. CONCLUSIONS: Trust in their physicians was a major factor for heart failure patients who reported not searching for health information on the internet. While those who used mobile health technologies found them useful, patients who did not use them were generally unaware of or unknowledgeable about them. Considering patients' preferences for recommendations from their physicians and tendency to search for heart failure information including treatment and management options, patient-provider discussions about mobile health may improve patient knowledge and impact their usage.

Scenarios, personas and user stories: user-centered evidence-based design representations of communicable disease investigations.

PURPOSE: Despite years of effort and millions of dollars spent to create unified electronic communicable disease reporting systems, the goal remains elusive. A major barrier has been a lack of understanding by system designers of communicable disease (CD) work and the public health workers who perform this work. This study reports on the application of user-centered design representations, traditionally used for improving interface design, to translate the complex CD work identified through ethnographic studies to guide designers and developers of CD systems. The purpose of this work is to: (1) better understand public health practitioners and their information workflow with respect to CD monitoring and control at a local health agency, and (2) to develop evidence-based design representations that model this CD work to inform the design of future disease surveillance systems. METHODS: We performed extensive onsite semi-structured interviews, targeted work shadowing and a focus group to characterize local health agency CD workflow. Informed by principles of design ethnography and user-centered design we created persona, scenarios and user stories to accurately represent the user to system designers. RESULTS: We sought to convey to designers the key findings from ethnographic studies: (1) public health CD work is mobile and episodic, in contrast to current CD reporting systems, which are stationary and fixed, (2) health agency efforts are focused on CD investigation and response rather than reporting and (3) current CD information systems must conform to public health workflow to ensure their usefulness. In an effort to illustrate our findings to designers, we developed three contemporary design-support representations: persona, scenario, and user story. CONCLUSIONS: Through application of user-centered design principles, we were able to create design representations that illustrate complex public health communicable disease workflow and key user characteristics to inform the design of CD information systems for public health.

Supportive care decision-making processes of persons with dementia and their caregivers.

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.