Seeing things the same way: perspectives and lessons learned from research-design collaborations.

Information visualizations are increasingly being developed by informatics researchers to communicate health information to lay audiences. For high-quality results, it is advisable to collaborate with creative professionals such as graphic designers, illustrators, or user interface/user experience designers. However, such collaborations are often a novel experience for both parties, each of which may be unfamiliar with the needs and processes of the other. We have coalesced our experiences from both the research and design perspectives to offer practical guidance in hopes of promoting the success of future collaborations. We offer suggestions for determining design needs, communicating with design professionals, and carrying out the design process. We assert that successful collaborations are predicated on careful and intentional planning at the outset of a project, a thorough understanding of each party's scope expertise, clear communication, and ample time for the design process to unfold.

Improving Patient-Reported Outcomes in Stroke Care using Remote Blood Pressure Monitoring and Telehealth.

BACKGROUND: Inequities in health care access leads to suboptimal medication adherence and blood pressure (BP) control. Informatics-based approaches may deliver equitable care and enhance self-management. Patient-reported outcomes (PROs) complement clinical measures to assess the impact of illness on patients' well-being in poststroke care. OBJECTIVES: The aim of this study was to determine the feasibility of incorporating PROs into Telehealth After Stroke Care (TASC) and to explore the effect of this team-based remote BP monitoring program on psychological distress and quality of life in an underserved urban setting. METHODS: Patients discharged home from a Comprehensive Stroke Center were randomized to TASC or usual care for 3 months. They were provided with a BP monitor and a tablet that wirelessly transmitted data to a cloud-based platform, which were integrated with the electronic health record. Participants who did not complete the tablet surveys were contacted via telephone or e-mail. We collected the Patient-Reported Outcomes Measurement Information System Managing Medications and Treatment (PROMIS-MMT), Patient Activation Measure (PAM), Neuro-QOL (Quality of Life in Neurological Disorders) Cognitive Function, Neuro-QOL Depression, and Patient Health Questionnaire-9 (PHQ-9). T-tests and linear regression were used to evaluate the differences in PRO change between the arms. RESULTS: Of the 50 participants, two-thirds were Hispanic or non-Hispanic Black individuals. Mechanisms of PRO submission for the arms included tablet (62 vs. 47%), phone (24 vs. 37%), tablet with phone coaching (10 vs. 16%), and e-mail (4 vs. 0%). PHQ-9 depressive scores were nominally lower in TASC at 3 months compared with usual care (2.7 ± 3.6 vs. 4.0 ± 4.1; p = 0.06). No significant differences were observed in PROMIS-MMT, PAM, or Neuro-QoL measures. CONCLUSION: Findings suggest the feasibility of collecting PROs through an interactive web-based platform. The team-based remote BP monitoring demonstrated a favorable impact on patients' well-being. Patients equipped with appropriate resources can engage in poststroke self-care to mitigate inequities in health outcomes.

Functional Dementia Stages App for Hispanic Family Caregivers: Heuristic Evaluation and Usability Testing.

Hispanic family caregivers of persons with dementia are not getting the anticipatory guidance they need about how functional abilities will change as dementia progresses. Existing informational resources are overwhelming to navigate and written at a high reading level. Furthermore, professional assessment of functional abilities is not universally available. Innovative, tailored approaches are needed. Our aim was to develop and test a mobile application (app), the Interactive Functional Assessment Staging Navigator (I-FASTN), to support Hispanic family caregivers' assessment of care recipients' functional stage of dementia in either English or Spanish. We conducted heuristic evaluation with experts (N = 5) and usability testing with caregivers (N = 20). Chief usability problems were a confusing tutorial and difficulty finding the app's side menu. The app was well-received by caregivers, who indicated that the concise, illustrated content met their informational needs. However, analog alternatives are still needed by caregivers unaccustomed to using apps. [Journal of Gerontological Nursing, 49(7), 9-15.].

"A patient should not have to ask": Women's experiences of patient education about preconception care for type 2 diabetes.

OBJECTIVES: To characterize perspectives and experiences regarding preconception care (PCC) patient education among women with type 2 diabetes. METHOD: Descriptive, qualitative research design. Thirty-two English-speaking women with type 2 diabetes identifying as Black and/or Latina, ages 18-40 years old, participated. We conducted semi-structured interviews about PCC perspectives and experiences which we analyzed with conventional content analysis. To enhance rigor, we collected freelisting data from which we calculated salience scores. We triangulated our qualitative findings with salience scores. RESULTS: We identified three themes. Our first theme concerned mismatch between women's desires for PCC counseling to be frequent in contrast with their experiences of its infrequency. Our second theme captured how women felt responsible for initiating care in the clinical encounter but uncertain about what they "should" be asking for. Our third theme characterized women's perspectives on receiving information about PCC and pregnancy planning. CONCLUSIONS: Young adult women with type 2 diabetes who are Black and/or Latina welcome more education about how PCC can prevent obstetrical complications associated with diabetes, which disproportionately affect their communities. PRACTICE IMPLICATIONS: Our findings provide actionable suggestions for improving acceptability and accessibility of PCC patient education in the United States where PCC awareness and uptake are low.

Comparison of Newest Vital Sign and Brief Health Literacy Screen scores in a large, urban Hispanic cohort.

OBJECTIVE: Prior studies comparing subjective and objective health literacy measures have yielded inconsistent results. Our aim was to examine the concordance between Newest Vital Sign (NVS) and Brief Health Literacy Screen (BHLS) scores in a large cohort of English- and Spanish-speaking urban Hispanic adults. METHODS: Item means, standard deviations, corrected-item total correlations, Cronbach's alpha, and Spearman correlations and area under receiver operating characteristic (AUROC) curve analysis were used to compare NVS and BHLS items and total scores. RESULTS: N = 2988 (n = 1259 English; n = 1729 Spanish). Scores on both measures demonstrated good internal consistency (NVS: α = .843 English, .846 Spanish; BHLS: α = .797 English, .846 Spanish) but NVS items had high difficulty; more than half of respondents scored 0. Measures were only weakly correlated (rs = .21, p < .001, English; rs = .19, p < .001, Spanish). The AUROC curves were .606 (English) and .605 (Spanish) for discriminating the lowest NVS scoring category. CONCLUSION: Subjective health literacy scores were poor predictors of objective scores. Objective scores demonstrated floor effects, precluding discrimination at low levels of the trait continuum. PRACTICE IMPLICATIONS: Subjective health literacy scores may fail to identify individuals with limited health literacy.

Telehealth After Stroke Care Pilot Randomized Trial of Home Blood Pressure Telemonitoring in an Underserved Setting.

BACKGROUND: Hypertension is the most important modifiable stroke risk factor, but blood pressure (BP) remains poorly controlled after stroke, especially among Black and Hispanic patients. We tested the feasibility of TASC (Telehealth After Stroke Care), a post-acute stroke care model integrating nurse-supported home BP telemonitoring, tailored infographics, and multidisciplinary team video visits. METHODS: Acute stroke patients with hypertension were randomized at discharge to usual care or usual care with TASC. Usual care patients received video visits with primary care and stroke. TASC included a tablet and monitor to wirelessly transmit BP data to the electronic health record, with telenursing support, tailored infographics to explain BP readings, and pharmacist visits. Outcomes assessment was blinded. Feasibility outcomes included recruitment, randomization, adherence, and retention. Systolic BP from baseline to 3 months after discharge was evaluated using generalized linear modeling. RESULTS: Fifty patients (64±14 years; 36% women' 44% Hispanic, 32% Black, 54% ≤high school education, 30% private insurance), and 75% of all eligible were enrolled over 6.3 months. Baseline systolic BP was similar in both (TASC n=25, 140±19 mm Hg; usual care n=25, 142±19 mm Hg). At 3 months, adherence to video visits (91% versus 75%, P=0.14) and retention (84% versus 64%, P=0.11) were higher with TASC. Home systolic BP declined by 16±19 mm Hg from baseline in TASC and increased by 3±24 mm Hg in usual care (P=0.01). Among Black patients, systolic BP control (<130 mm Hg) improved from 40% to 100% with TASC versus 14% to 29%, and among Hispanic patients, from 23% to 62% with TASC, versus 33% to 17% in usual care. CONCLUSIONS: Enhancing post-acute stroke care with home BP telemonitoring is feasible to improve hypertension in an underserved setting and should be tested in a definitive randomized clinical trial. REGISTRATION: URL: https://www. CLINICALTRIALS: gov; Unique identifier: NCT04640519.

TASC (Telehealth After Stroke Care): a study protocol for a randomized controlled feasibility trial of telehealth-enabled multidisciplinary stroke care in an underserved urban setting.

BACKGROUND: Hypertension is the most important modifiable risk factor for recurrent stroke, and blood pressure (BP) reduction is associated with decreased risk of stroke recurrence. However, hypertension remains poorly controlled in many stroke survivors. Black and Hispanic patients have a higher prevalence of uncontrolled BP and higher rates of stroke. Limited access to care contributes to challenges in post-stroke care. Telehealth After Stroke Care (TASC) is a telehealth intervention that integrates remote BP monitoring (RBPM) including nursing telephone support, tailored BP infographics and telehealth video visits with a multidisciplinary team approach including pharmacy to improve post-stroke care and reduce stroke disparities. METHODS: In this pilot trial, 50 acute stroke patients with hypertension will be screened for inclusion prior to hospital discharge and randomized to usual care or TASC. Usual care patients will be seen by a primary care nurse practitioner at 1-2 weeks and a stroke neurologist at 1 and 3 months. In addition to these usual care visits, TASC intervention patients will see a pharmacist at 4 and 8 weeks and will be enrolled in RBPM consisting of home BP monitoring with interval calls by a centralized team of telehealth nurses. As part of RBPM, TASC patients will be provided with a home BP monitoring device and electronic tablet that wirelessly transmits home BP data to the electronic health record. They will also receive tailored BP infographics that help explain their BP readings. The primary outcome will be feasibility including recruitment, adherence to at least one video visit and retention rates. The clinical outcome for consideration in a subsequent trial will be within-patient change in BP from baseline to 3 months after discharge. Secondary outcomes will be medication adherence self-efficacy and satisfaction with post-stroke telehealth, both measured at 3 months. Additional patient reported outcomes will include depression, cognitive function, and socioeconomic determinants. Multidisciplinary team competency and fidelity measures will also be assessed. CONCLUSIONS: Integrated team-based interventions may improve BP control and reduce racial/ethnic disparities in post-stroke care. TASC is a post-acute stroke care model that is novel in providing RBPM with tailored infographics, and a multidisciplinary team approach including pharmacy. Our pilot will determine if such an approach is feasible and effective in enhancing post-stroke BP control and promoting self-efficacy. TRIAL REGISTRATION: ClinicalTrials.gov NCT04640519.

Environmental Scan of Parent-Facing Health Information About Antibiotics in US Children's Hospital Websites.

Nearly half of free-standing children's hospital websites contain parent-facing resources about antibiotics. Most resources have information on safe antibiotic use, antibiotic resistance, and questions to ask clinicians. Accessibility can be improved by increasing readability, available languages, and multimedia. Future research should evaluate information accuracy, actionability, and comprehension with target audiences.

Application of persuasive systems design principles to design a self-management application user interface for Hispanic informal dementia caregivers: user preferences and perceptions.

OBJECTIVE: We designed an mHealth application (app) user interface (UI) prototype informed by participatory design sessions, persuasive systems design (PSD) principles, and Lorig and Holman's self-management behavior framework to support self-management activities of Hispanic informal dementia caregivers and assessed their perceptions and preferences regarding features and functions of the app. MATERIALS AND METHODS: Our observational usability study design employed qualitative methods and forced choice preference assessments to identify: (1) the relationship between user preferences for UI features and functions and PSD principles and (2) user preferences for UI design features and functions and app functionality. We evaluated 16 pairs of mHealth app UI prototype designs. Eight paper-based paired designs were used to assess the relationship between PSD principles and caregiver preferences for UI features and functions to support self-management. An Apple iPad WIFI 32GB was used to display another 8 paired designs and assess caregiver preferences for UI functions to support the self-management process. RESULTS: Caregivers preferred an app UI with features and functions that incorporated a greater number of PSD principles and included an infographic to facilitate self-management. Moreover, caregivers preferred a design that did not depend on manual data entry, opting instead for functions such as drop-down list, drag-and-drop, and voice query to prioritize, choose, decide, and search when performing self-management activities. CONCLUSION: Our assessment approaches allowed us to discern which UI features, functions, and designs caregivers preferred. The targeted application of PSD principles in UI designs holds promise for supporting personalized problem identification, goal setting, decision-making, and action planning as strategies for improving caregiver self-management confidence.

Developing an educational resource for parents on pediatric catheter-associated urinary tract infection (CAUTI) prevention.

BACKGROUND: Pediatric catheter-associated urinary tract infection (CAUTI) prevention guidelines encourage family engagement; however, there is a dearth of research on parent-facing CAUTI prevention resources. We aimed to meet the learning needs of parents about CAUTI prevention in the hospital by developing and refining an educational pamphlet with parents. METHODS: Phase 1: We compiled existing evidence from CAUTI prevention guidelines and conducted a focus group with parents to form learning objectives. Phase 2: We developed prototype design elements, tested initial designs with a survey, and conducted qualitative participatory design sessions with parents to iteratively refine the pamphlet until design saturation was reached. RESULTS: We identified the following key themes and preferences: (1) Clear boundaries for engagement (e.g., parents would not be emptying the catheter); (2) Positive, actionable framing (e.g., what should proper catheter positioning look like?); (3) What to expect (e.g., is the catheter painful for my child?); (4) Parents considered both their and their child's comprehension of the content when providing feedback. CONCLUSIONS: Overall, we demonstrated the utility of remote participatory design methods in developing and refining a CAUTI prevention resource based on parents' preferences. Future research should consider adapting these methods and implementing formal evaluation for comprehension for eventual integration into clinical practice.

User-centered design of a scalable, electronic health record-integrated remote symptom monitoring intervention for patients with asthma and providers in primary care.

OBJECTIVE: To determine user and electronic health records (EHR) integration requirements for a scalable remote symptom monitoring intervention for asthma patients and their providers. METHODS: Guided by the Non-Adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework, we conducted a user-centered design process involving English- and Spanish-speaking patients and providers affiliated with an academic medical center. We conducted a secondary analysis of interview transcripts from our prior study, new design sessions with patients and primary care providers (PCPs), and a survey of PCPs. We determined EHR integration requirements as part of the asthma app design and development process. RESULTS: Analysis of 26 transcripts (21 patients, 5 providers) from the prior study, 21 new design sessions (15 patients, 6 providers), and survey responses from 55 PCPs (71% of 78) identified requirements. Patient-facing requirements included: 1- or 5-item symptom questionnaires each week, depending on asthma control; option to request a callback; ability to enter notes, triggers, and peak flows; and tips pushed via the app prior to a clinic visit. PCP-facing requirements included a clinician-facing dashboard accessible from the EHR and an EHR inbox message preceding the visit. PCP preferences diverged regarding graphical presentations of patient-reported outcomes (PROs). Nurse-facing requirements included callback requests sent as an EHR inbox message. Requirements were consistent for English- and Spanish-speaking patients. EHR integration required use of custom application programming interfaces (APIs). CONCLUSION: Using the NASSS framework to guide our user-centered design process, we identified patient and provider requirements for scaling an EHR-integrated remote symptom monitoring intervention in primary care. These requirements met the needs of patients and providers. Additional standards for PRO displays and EHR inbox APIs are needed to facilitate spread.

Patient and Family Engagement in Catheter-Associated Urinary Tract Infection (CAUTI) Prevention: A Systematic Review.

BACKGROUND: Catheter-associated urinary tract infections (CAUTIs) are detrimental to health and are largely preventable with adherence to CAUTI prevention guidelines. Patient and family engagement in CAUTI prevention is often encouraged in these guidelines; however, little is known about how this engagement is operationalized in practice. A systematic review was conducted to synthesize the content, format, and outcomes of interventions that engage patients and/or families in CAUTI prevention. METHODS: Two reviewers independently screened records from four databases up to March 2021 and searched reference lists of final articles. Included articles were primary research, tested an intervention, involved indwelling urinary catheters, and described at least one patient and/or family engagement method. Articles were appraised for quality using the Downs and Black checklist. RESULTS: After 720 records were screened, 12 were included. Study quality ranged from good to poor, scoring lowest in internal validity. The most common formats of patient/family engagement were flyers/handouts (83.3%) and verbal education (58.3%). Common content areas were urinary catheter care and maintenance strategies. Most study outcomes (83.3%) measured CAUTI rates, and half measured patient/family-related outcomes. Improvements were seen in at least one outcome across all studies, but less than half (41.7%) showed statistically significant results. CONCLUSION: The researchers found that most interventions lacked sufficient detail on the content, delivery, and/or outcome measurement of patient/family engagement, which limits transferability. More high-quality, generalizable trials are warranted in this area. Future research should focus on integrating publicly available resources into practice that can be tested for comprehension and revised based on feedback from target audiences.

Promoting Latino Self-Management Through Use of Information Visualizations: A Case Study in New York City.

Social determinants of health, including low health literacy and limited English proficiency, and other factors place Latinos at high risk for health disparities related to chronic diseases. Such diseases require self-management skills as well as medical management. Well-designed visualizations are suitable for visualizing data related to self-management because they can help narrow the comprehension gap between individuals with low and high levels of health literacy by leveraging existing visual analysis skills while reducing the demand on literacy and numeracy competencies. Use of information visualizations also supports a common visual representation across languages to address limited English proficiency. This report illustrates the use of information visualizations for communication related to self-management through research-based case examples and summarizes key lessons from studies with Latinos in New York City.

Reference range number line format preferred by adults for display of asthma control status.

Objective: Optimal asthma self-management requires an accurate understanding of one's asthma control status. Tailored infographics are a promising way of conveying status information but little is known about which formats are effective at supporting comprehension while also being appealing to adults with asthma.Methods: In this focus group study, we compared two formats to display Asthma Control Questionnaire (ACQ) scores: a stoplight graphic and a reference range number line (RRNL).Results: Both formats supported comprehension but the RRNL was strongly preferred for its informativeness and for cueing participants to consider the self-management strategies they should undertake to improve their asthma control.Conclusions: The RRNL format may have broad appeal and can be adapted to numerous clinical variables for low health literacy patient-facing displays, as in patient portals. However, until viewers are familiar with the format, use as a communication tool in the context of a clinical visit is recommended to forestall undue alarm over abnormal/out-of-range values.

African Americans Want a Focus on Shared Decision-Making in Asthma Adherence Interventions.

BACKGROUND AND OBJECTIVE: Inhaled corticosteroids (ICS) reduce asthma-related morbidity and mortality. However, ICS non-adherence is more common in African American (AA) adults than White adults and explains, in part, the marked asthma disparities that AAs experience. We aimed to understand how ICS non-adherence could be addressed from the perspective of AA adults with asthma, their family, and friends. METHODS: We held six focus groups at two urban federally qualified health centers separately with adult asthma patients (n = 2), patients' family/friends (n = 2), and patients and family/friends together (n = 2). Qualitative descriptive methodology guided the design and the conduct of focus groups. Verbatim transcripts were analyzed by three coders working independently using conventional content analysis to capture responses to interview questions and identify emergent categories. RESULTS: Forty-six AA adults participated (32 patients, 14 family/friends); 67% were female. Participants stated that ICS adherence could be improved if they were heard, respected, and received patient-centered care, and if providers highlighted the risk of ICS non-adherence at clinic visits. Though not explicitly described by participants as shared decision-making (SDM), what they described included many essential elements of SDM. CONCLUSIONS: Participants desired SDM and offered reasons for ICS non-adherence that could be used to inform an SDM intervention for clinical application. Strategies informed by the recipients of care and delivered by providers during routine office visits offer a scalable approach to narrowing asthma disparities experienced by AA adults. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT03036267.

Design and Comprehension Testing of Tailored Asthma Control Infographics for Adults with Persistent Asthma.

BACKGROUND: Adherence to daily inhaled corticosteroid medication is important for asthma control but low health literacy is a barrier to comprehension of control status and may contribute to medication nonadherence. Infographics tailored with patients' own data can support comprehension of health status, but these have not been applied to asthma successfully. OBJECTIVES: This two-phased study developed and tested tailored infographics of (1) scores on the Asthma Control Questionnaire (ACQ), a self-report measure of symptom burden, and (2) pulmonary function test (PFT) results. The infographics are intended for use as communication and adherence-promotion tools in clinical interactions. METHODS: For both phases, participants (18+ years, English- or Spanish-speaking, persistent asthma) were recruited through two primary care clinics. In Phase I, we used a hybrid iterative participatory design process to refine prototype designs. In Phase II, we conducted individual comprehension assessment interviews with the finalized designs. Infographics were hand-tailored for each participant using their ACQ score and PFT results collected at the start of the interview. Two independent raters scored interview transcripts for gist and verbatim comprehension based on a predetermined rubric. RESULTS: The five Phase I design sessions led to final prototypes that participants (n = 21) considered appealing and easy to comprehend. All Phase II participants (n = 10) demonstrated complete gist and verbatim comprehension. Participants reacted favorably to receiving their information via infographics and expressed intentions to engage in self-management behaviors (e.g., medication adherence, smoking cessation, weight loss, and review of their care plan) in response to the information. CONCLUSION: This study provides preliminary evidence that infographics can support comprehension of asthma control status and promote self-management intentions among adults with persistent asthma. Infographics can be programmed into electronic health records and/or standalone applications to allow for instant tailoring at the point of care.

Development of Pictograms for an Interactive Web Application to Help Hispanic Caregivers Learn About the Functional Stages of Dementia.

Caregivers of persons with dementia need anticipatory guidance about the stages of dementia in order to prepare for the caregiving situations they will face. The study objective was to develop a set of pictograms representing the functional stages of dementia for eventual inclusion in a tailored, educational web application. We used a hybrid iterative participatory design process. A graphic designer prepared prototypes in a flat, minimalistic style. These were then culled and refined based on feedback from 16 Hispanic caregivers in six design sessions in English and Spanish. The resulting 19 pictograms representing the functional stages and substages of dementia were acceptable to and easily comprehended by participants. Short, plain-language captions support comprehension and aid discrimination between similar scenarios. Our participants preferred candid depictions of all aspects of dementia, including bodily functions, but acceptability may vary by population so further testing is warranted prior to deployment with a new population.

Informatics and Data Science for the Precision in Symptom Self-Management Center.

The goal of the Precision in Symptom Self-Management (PriSSM) Center is to advance the science of symptom self-management for Latinos through a social ecological lens that takes into account variability in individual, interpersonal, organizational, and environmental factors across the life course. Informatics and data science methods are foundational to PriSSM's research activities including its pilot studies and research resources. This work highlights three areas: Latino Data Repository, Information Visualization, and Center Evaluation.