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.

Perceptions of patient-reported outcome data access and sharing among patients with heart failure: ethical implications for research.

AIMS: In the face of growing expectations for data transparency and patient engagement in care, we evaluated preferences for patient-reported outcome (PRO) data access and sharing among patients with heart failure (HF) using an ethical framework. METHODS AND RESULTS: We conducted qualitative interviews with a purposive sample of patients with HF who participated in a larger 8-week study that involved the collection and return of PROs using a web-based interface. Guided by an ethical framework, patients were asked questions about their preferences for having PRO data returned to them and shared with other groups. Interview transcripts were coded by three study team members using directed content analysis. A total of 22 participants participated in semi-structured interviews. Participants were mostly male (73%), White (68%) with a mean age of 72. Themes were grouped into priorities, benefits, and barriers to data access and sharing. Priorities included ensuring anonymity when data are shared, transparency with intentions of data use, and having access to all collected data. Benefits included: using data as a communication prompt to discuss health with clinicians and using data to support self-management. Barriers included: challenges with interpreting returned results, and potential loss of benefits and anonymity when sharing data. CONCLUSION: Our interviews with HF patients highlight opportunities for researchers to return and share data through an ethical lens, by ensuring privacy and transparency with intentions of data use, returning collected data in comprehensible formats, and meeting individual expectations for data sharing.

Health literacy, numeracy, graph literacy, and digital literacy: An overview of definitions, evaluation methods, and best practices.

Health literacy is an important skill for people receiving care. Those with limited literacy face disparities in their care and health outcomes when strategies for addressing literacy are not used when delivering health information. In this article, we introduce the importance of considering health literacy, defining it and related concepts including numeracy, graph literacy, and digital literacy, and discuss open questions about measuring health literacy in clinical care. Finally, we present best practices, including assuming "universal precautions," carefully considering wording, leveraging visualizations, recognizing cultural differences in interpretation, guidance on pilot testing, and considering digital literacy when developing electronic materials.

Implications of Under-Reporting Medication Side Effects: Beta-Blockers in Heart Failure as a Case Example.

INTRODUCTION: Perceiving medication side effects but not reporting them to a clinician is common. Patterns of "under-reporting" and their implications are not well described. We aimed to address this gap by examining patterns of under-reporting perceived side effects of beta-blockers among patients with heart failure. METHODS: In 2016, a survey that evaluated medication-taking behavior was administered to 1114 participants (46.5% response rate) from The Reasons for Geographic and Racial Differences in Stroke (REGARDS) cohort with prior adjudicated heart failure hospitalization or a heart failure Medicare claim. We examined the results of survey respondents who reported taking a beta-blocker to understand patterns of under-reporting perceived beta-blocker side effects. We defined an under-reporter as a participant who perceived experiencing a side effect from their beta-blocker but did not share it with their clinician (according to survey responses). We conducted a multivariable logistic regression analysis to identify determinants of being an under-reporter. Co-variates included age, sex, race, income, level of education, geographical location, and pill burden. We also examined whether under-reporters differed in self-reported medication adherence and willingness to take additional medication to prevent a future healthcare encounter compared to participants who reported perceived side effects to their clinicians and those who did not experience side effects. RESULTS: Among 310 respondents, 28% (n = 87) were under-reporters. Black race (odds ratio 2.11, confidence interval 1.21-3.67) and education less than college (odds ratio 2.00, confidence interval 1.09-3.67) were associated with being an under-reporter. Self-reported medication adherence was similar between groups (under-reporters: 46.3%; those who reported perceived side effects: 49.4%; those who did not experience side effects: 45.0%); under-reporters were more frequently unwilling to take additional medication to prevent a doctor's visit (18.9% vs 12.1% vs 10.8%), emergency room visit (21.6% vs 13.3% vs 9.9%), and hospitalization (17.6% vs 10.8% vs 9.0%) compared with the other groups. CONCLUSION: We conclude that under-reporting perceived side effects of beta-blockers among adults with heart failure is common, is associated with Black race and low education, and may contribute to patient willingness to take additional medication to prevent future medical encounters.

A RE-AIM Evaluation of a Visualization-Based Electronic Patient-Reported Outcome System.

OBJECTIVES: Health care systems are primarily collecting patient-reported outcomes (PROs) for research and clinical care using proprietary, institution- and disease-specific tools for remote assessment. The purpose of this study was to conduct a Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) evaluation of a scalable electronic PRO (ePRO) reporting and visualization system in a single-arm study. METHODS: The "mi.symptoms" ePRO system was designed using gerontechnological design principles to ensure high usability among older adults. The system enables longitudinal reporting of disease-agnostic ePROs and includes patient-facing PRO visualizations. We conducted an evaluation of the implementation of the system guided by the RE-AIM framework. Quantitative data were analyzed using basic descriptive statistics, and qualitative data were analyzed using directed content analysis. RESULTS: Reach-the total reach of the study was 70 participants (median age: 69, 31% female, 17% Black or African American, 27% reported not having enough financial resources). Effectiveness-half (51%) of participants completed the 2-week follow-up survey and 36% completed all follow-up surveys. Adoption-the desire for increased self-knowledge, the value of tracking symptoms, and altruism motivated participants to adopt the tool. Implementation-the predisposing factor was access to, and comfort with, computers. Three enabling factors were incorporation into routines, multimodal nudges, and ease of use. Maintenance-reinforcing factors were perceived usefulness of viewing symptom reports with the tool and understanding the value of sustained symptom tracking in general. CONCLUSION: Challenges in ePRO reporting, particularly sustained patient engagement, remain. Nonetheless, freely available, scalable, disease-agnostic systems may pave the road toward inclusion of a more diverse range of health systems and patients in ePRO collection and use.

Returning study results to research participants: Data access, format, and sharing preferences.

INTRODUCTION: Research participants have a growing expectation for transparency with their collected information; however, there is little guidance on participant preferences for receiving health information and how researchers should return this information to participants. METHODS: We conducted a cross-sectional online survey with a representative sample of 502 participants in the United States. Participants were asked about their preferences for receiving, sharing, and the formatting of health information collected for research purposes. RESULTS: Most participants wanted their health information returned (84 %) to use it for their own knowledge and to manage their own health. Email was the most preferred format for receiving health data (67 %), followed by online website (44 %), and/or paper copy (32 %). Data format preferences varied by age, education, financial resources, subjective numeracy, and health literacy. Around one third of Generation Z (25 %), Millennials (30 %), and Generation X (29 %) participants preferred to receive their health information with a mobile app. In contrast, very few Baby Boomers (12 %) and none from the Silent Generation preferred the mobile app format. Having a paper copy of the data was preferred by 38 % of participants without a college degree compared to those with a college degree. Preferences were highest for sharing all health information with doctors and nurses (77 %), and some information with friends and family (66 %). CONCLUSION: Study findings support returning research information to participants in multiple formats, including email, online websites, and paper copy. Preferences for whom to share information with varied by stakeholders and by sociodemographic characteristics. Researchers should offer multiple formats to participants and tailor data sharing options to participants' preferences. Future research should further explore combinations of individual characteristics that may further influence data sharing and format preferences.

'Replace uncertainty with information': shared decision-making and decision quality surrounding catheter ablation for atrial fibrillation.

AIMS: As a first step in developing a decision aid to support shared decision-making (SDM) for patients with atrial fibrillation (AF) to evaluate treatment options for rhythm and symptom control, we aimed to measure decision quality and describe decision-making processes among patients and clinicians involved in decision-making around catheter ablation for AF. METHODS AND RESULTS: We conducted a cross-sectional, mixed-methods study guided by an SDM model outlining decision antecedents, processes, and outcomes. Patients and clinicians completed semi-structured interviews about decision-making around ablation, feelings of decision conflict and regret, and preferences for the content, delivery, and format of a hypothetical decision aid for ablation. Patients also completed surveys about AF symptoms and aspects of decision quality. Fifteen patients (mean age 71.1 ± 8.6 years; 27% female) and five clinicians were recruited. For most patients, decisional conflict and regret were low, but they also reported low levels of information and agency in the decision-making process. Most clinicians report routinely providing patients with information and encouraging engagement during consultations. Patients reported preferences for an interactive, web-based decision aid that clearly presents evidence regarding outcomes using data, visualizations, videos, and personalized risk assessments, and is available in multiple languages. CONCLUSION: Disconnects between clinician efforts to provide information and bolster agency and patient experiences of decision-making suggest decision aids may be needed to improve decision quality in practice. Reported experiences with current decision-making practices and preferences for decision aid content, format, and delivery can support the user-centred design and development of a decision aid.

Human Papillomavirus Vaccination Among Transgender and Gender Diverse People in the United States: An Integrative Review.

Objective: This integrative review explores the barriers to and facilitators for human papillomavirus (HPV) vaccination among adult transgender and gender diverse (TGD) people in the United States. Data Source: A systematic search of electronic databases included PubMed/MEDLINE, CINAHL, and EMBASE from 1985 to 2020. Inclusion and Exclusion Criteria: Inclusion criteria included studies from the United States that described HPV vaccination barriers or facilitators and included adult TGD participants, both quantitative and qualitative studies. Exclusion criteria were studies that reported only HPV vaccine prevalence, non-English/non-U.S. studies, and studies limited to pediatric populations. Data Extraction: Two investigators used Covidence software to screen studies and manage data extraction. Quality of the quantitative studies was appraised using a checklist proposed by the Joanna Briggs Institute (JBI); qualitative studies were appraised using quality criteria informed by the literature. Data Synthesis: The Social Ecological Model guided the review to organize barriers to and facilitators for HPV vaccination at the patient-, provider-, and system-levels. Results: Database searches and hand-searching yielded 843 citations. After screening, eight articles were retained in the review. Seven were cross-sectional studies and one was a qualitative focus-group. All retained quantitative studies met six of the eight JBI quality checklist items. Conclusion: The low proportion of TGD participants in the retained studies highlights a gap in knowledge about HPV vaccination among this population. Future studies of HPV vaccination should recruit TGD people to better represent their perspectives.

Building trust in research through information and intent transparency with health information: representative cross-sectional survey of 502 US adults.

OBJECTIVE: Participation in healthcare research shapes health policy and practice; however, low trust is a barrier to participation. We evaluated whether returning health information (information transparency) and disclosing intent of data use (intent transparency) impacts trust in research. MATERIALS AND METHODS: We conducted an online survey with a representative sample of 502 US adults. We assessed baseline trust and change in trust using 6 use cases representing the Social-Ecological Model. We assessed descriptive statistics and associations between trust and sociodemographic variables using logistic and multinomial regression. RESULTS: Most participants (84%) want their health research information returned. Black/African American participants were more likely to increase trust in research with individual information transparency (odds ratio (OR) 2.06 [95% confidence interval (CI): 1.06-4.34]) and with intent transparency when sharing with chosen friends and family (3.66 [1.98-6.77]), doctors and nurses (1.96 [1.10-3.65]), or health tech companies (1.87 [1.02-3.40]). Asian, Native American or Alaska Native, Native Hawaiian or Pacific Islander, Multirace, and individuals with a race not listed, were more likely to increase trust when sharing with health policy makers (1.88 [1.09-3.30]). Women were less likely to increase trust when sharing with friends and family (0.55 [0.35-0.87]) or health tech companies (0.46 [0.31-0.70]). DISCUSSION: Participants wanted their health information returned and would increase their trust in research with transparency when sharing health information. CONCLUSION: Trust in research is influenced by interrelated factors. Future research should recruit diverse samples with lower baseline trust levels to explore changes in trust, with variation on the type of information shared.

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.

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.

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.

Home Health Staff Perspectives on Infection Prevention and Control: Implications for Coronavirus Disease 2019.

OBJECTIVES: The role of home healthcare (HHC) services in providing care to vulnerable, often frail individuals with chronic conditions is critical. Effective infection prevention and control (IPC) in HHC is essential to keeping both healthcare workers and patients safe, especially in the event of an emerging infectious disease outbreak. Prior to the coronavirus disease 2019 pandemic, we explored successes and challenges with IPC from the perspectives of HHC staff. DESIGN: Qualitative descriptive study. SETTING AND PARTICIPANTS: From May to November 2018, we conducted in-depth telephone interviews with 41 staff from 13 agencies across the nation. METHODS: Transcripts were coded by a multidisciplinary coding team, and several primary and subcategories were identified using directed content analysis. RESULTS: Four primary categories were generated including (1) uniqueness of HHC; (2) IPC as a priority; (3) importance of education; and (4) keys to success and innovation. Participants perceived that IPC plays a big part in patient safety and reducing rehospitalizations, and protection of patients and staff was a major motivator for compliance with IPC. The identified challenges included the unpredictability of the home environment, patient/family dynamics, the intermittent nature of HHC, and staffing issues. Education was seen as a tool to improve staff, patient, caregiver and families' compliance with IPC. Keys to success and innovation included a leadership focus on quality, using agency infection data to improve quality, and a coordinated approach to patient care. CONCLUSIONS AND IMPLICATIONS: This qualitative work identified barriers to effective IPC in HHC, as well as important facilitators that HHC agencies can use to implement policies and procedures to improve patient care and keep staff safe. Leadership prioritization of IPC is key to implementing appropriate IPC policies and may be especially important in midst of a crisis such as coronavirus disease 2019.

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.

A Scoping Review of Tailored Self-management Interventions among Adults with Mobility Impairing Neurological and Musculoskeletal Conditions.

A critical public health objective is to optimize and disseminate self-management interventions for the 56.7 million adults living with chronic disabling conditions in the United States. A possible strategy to optimize the effectiveness of self-management interventions is to understand how best to tailor self-management interventions to the needs and circumstances of each participant. Thus, the purpose of this scoping review was to describe randomized controlled trials (RCTs) of tailored self-management interventions in adults with neurological and musculoskeletal conditions that characteristically result in mobility impairments. The 13 RCTs included in the scoping review typically compared tailored interventions to non-tailored interventions or usual care among adults with chronic pain, stroke, and/or arthritis. The tailored interventions were diverse in their delivery formats, dosing, behavior change techniques, and tailoring strategies. We identified 13 personal characteristics (e.g., preferences and theoretical constructs) and 4 types of assessment formats (i.e., oral history, self-report questionnaires, provider-reported assessments, and medical records) that were used to tailor the self-management interventions. It was common to tailor intervention content using self-report questionnaires that assessed personal characteristics pertaining to impairments and preferences. Content was matched to personal characteristics using clinical judgment or computer algorithms. However, few studies adequately described the decision rules for matching content. To advance the science of tailoring self-management interventions, we recommend conducting comparative effectiveness research and further developing a taxonomy to standardize descriptions of tailoring. We discuss the opportunities that are now coalescing to optimize tailored self-management. We also provide examples of how to merge concepts from the self-management literature with conceptual frameworks of tailoring from the health communication literature.