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BackgroundConsumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as “quantified self” advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. ObjectiveOur aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? MethodsWe used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. ResultsInterviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients’ self-tracked data. ConclusionsDevelopers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered “illness work” connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their “illness work” more efficiently and effectively.

BackgroundA critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors. ObjectiveAs part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information. MethodsSemistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved. ResultsA total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others—particularly those who had had bad experiences in the past—took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients’ perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment. ConclusionsWe conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.

PURPOSE The need to rapidly implement telemedicine in primary care during the coronavirus disease 2019 (COVID-19) pandemic was addressed differently by various practices. Using qualitative data from semistructured interviews with primary care practice leaders, we aimed to report commonly shared experiences and unique perspectives regarding telemedicine implementation and evolution/maturation since March 2020. METHODS We administered a semistructured, 25-minute, virtual interview with 25 primary care practice leaders from 2 health systems in 2 states (New York and Florida) included in PCORnet, the Patient-Centered Outcomes Research Institute clinical research network. Questions were guided by 3 frameworks (health information technology evaluation, access to care, and health information technology life cycle) and involved practice leaders' perspectives on the process of telemedicine implementation in their practice, with a specific focus on the process of maturation and facilitators/barriers. Two researchers conducted inductive coding of qualitative data open-ended questions to identify common themes. Transcripts were electronically generated by virtual platform software. RESULTS Twenty-five interviews were administered for practice leaders representing 87 primary care practices in 2 states. We identified the following 4 major themes: (1) the ease of telemedicine adoption depended on both patients' and clinicians' prior experience using virtual health platforms, (2) regulation of telemedicine varied across states and differentially affected the rollout processes, (3) visit triage rules were unclear, and (4) there were positive and negative effects of telemedicine on clinicians and patients. CONCLUSIONS Practice leaders identified several challenges to telemedicine implementation and highlighted 2 areas, including telemedicine visit triage guidelines and telemedicine-specific staffing and scheduling protocols, for improvement. Key words: telemedicine; primary care; COVID-19 pandemic; East Coast; primary health care; https://doi.org/10.1370/afm.2967, INTRODUCTION The abrupt onset of the coronavirus disease 2019 (COVID-19) pandemic required a rapid implementation of telemedicine--the synchronous delivery of health care in an audio-plus-video or audio-only modality--in primary care. [...]

Data visualizations can be effective and inclusive means for helping people understand health-related data. Yet numerous high-quality studies comparing data visualizations have yielded relatively little practical design guidance because of a lack of clarity about what communicators want their audience to accomplish. When conducting rigorous evaluations of communication (eg, applying the ISO 9186 method), describing the process simply as evaluating "comprehension" or "interpretation" of visualizations fails to do justice to the true range of outcomes being studied. We present newly developed taxonomies of outcome measures and tasks that are guiding a large-scale systematic review of the health numbers communication literature. Using these taxonomies allows a designer to determine whether a specific data presentation format or feature supports or inhibits the desired audience cognitions, feelings, or behaviors. We argue that taking a granular, outcomes-based approach to designing and evaluating information visualization research is essential to deriving practical, actionable knowledge from it. [ABSTRACT FROM AUTHOR]

Introduction:Although telemedicine emerged during the COVID-19 pandemic as a critical mode of health care delivery, there may be differences in the perceived ease of patient-clinician communication and quality of care for telemedicine versus in-person visits, as well as variation in perceptions across patient subgroups. We examined patients' experiences with and preferences for telemedicine relative to in-person care, based on their most recent visit. Methods:We conducted a survey of 2,668 adults in a large academic health care system in November 2021. The survey captured patients' reasons for their most recent visit, perceptions on patient-clinician communication and quality of care, and attitudes toward telemedicine versus in-person care. Results:Among respondents, 552 (21%) had a telemedicine visit. Patients with telemedicine and in-person visits had similar agreement on ease of patient-clinician communication and perceived quality of the visit on average. However, for individuals 65 years of age or older, men, and those not needing urgent care, telemedicine was associated with worse perceptions of patient-clinician communication (65 years of age or older: adjusted odds ratio [aOR], 0.51; 95% confidence interval [CI], 0.31–0.85; men: aOR, 0.50; 95% CI, 0.31–0.81; urgent care: aOR 0.67; 95% CI, 0.49–0.91) and lower perceived quality (65 years of age or older, aOR 0.51; 95% CI, 0.30–0.86; men: 0.51; 95% CI, 0.32–0.83; urgent care: aOR 0.68; 95% CI, 0.49–0.93). Conclusion:Patient-perceived quality of care and patient-clinician communication were similar for telemedicine and in-person visits overall. However, among men, older adults, and those not seeking urgent care, patients using telemedicine had lower perceptions of patient-clinician communication and quality. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]