Understanding Symptom Self-Monitoring Needs Among Postpartum Black Patients: Qualitative Interview Study.

BACKGROUND: Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms. OBJECTIVE: We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings. METHODS: We conducted semistructured interviews with 36 participants-15 (42%) obstetric health professionals, 10 (28%) mental health professionals, and 11 (31%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process. RESULTS: Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems-level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured. CONCLUSIONS: Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources.

Patient Experiences with and Preferences for Telemedicine Relative to In-Person Care During the COVID-19 Pandemic.

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.

Do you want to promote recall, perceptions, or behavior? The best data visualization depends on the communication goal.

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.

Development of a novel instrument to characterize telemedicine programs in primary care.

BACKGROUND: Given the rapid deployment of telemedicine at the onset of the COVID - 19 pandemic, updated assessment methods are needed to study and characterize telemedicine programs. We developed a novel semi - structured survey instrument to systematically describe the characteristics and implementation processes of telemedicine programs in primary care. METHODS: In the context of a larger study aiming to describe telemedicine programs in primary care, a survey was developed in 3 iterative steps: 1) literature review to obtain a list of telemedicine features, facilitators, and barriers; 2) application of three evaluation frameworks; and 3) stakeholder engagement through a 2-stage feedback process. During survey refinement, items were tested against the evaluation frameworks while ensuring it could be completed within 20-25 min. Data reduction techniques were applied to explore opportunity for condensed variables/items. RESULTS: Sixty initially identified telemedicine features were reduced to 32 items / questions after stakeholder feedback. Per the life cycle framework, respondents are asked to report a month in which their telemedicine program reached a steady state, i.e., "maturation". Subsequent questions on telemedicine features are then stratified by telemedicine services offered at the pandemic onset and the reported point of maturation. Several open - ended questions allow for additional telemedicine experiences to be captured. Data reduction techniques revealed no indication for data reduction. CONCLUSION: This 32-item semi-structured survey standardizes the description of primary care telemedicine programs in terms of features as well as maturation process. This tool will facilitate evaluation of and comparisons between telemedicine programs across the United States, particularly those that were deployed at the pandemic onset.

Beyond mathematics, statistics, and programming: data science, machine learning, and artificial intelligence competencies and curricula for clinicians, informaticians, science journalists, and researchers.

Data science, machine learning and artificial intelligence applications impact clinicians, informaticians, science journalists, and researchers. Most biomedical data science training focuses on learning a programming language in addition to higher mathematics and advanced statistics. This approach is appropriate for graduate students but greatly reduces the number of individuals in healthcare who can be involved in data science. To serve these four stakeholder audiences, we describe several curricular strategies focusing on solving real problems of interest to these audiences. Relevant competencies for these audiences include using intuitive programming tools that facilitate data exploration with minimal programming background, creating data models, evaluating results of data analyses, and assessing data science research reports, among others. Offering the curricula described here more broadly could broaden the stakeholder groups knowledgeable about and engaged in data science.

The State-of-the-Art of Patient Portals: Adapting to External Factors, Addressing Barriers, and Innovating.

BACKGROUND AND OBJECTIVE: Recent external factors-the 21st Century Cures Act and the coronavirus disease 2019 (COVID-19) pandemic-have stimulated major changes in the patient portal landscape. The objective of this state-of-the-art review is to describe recent developments in the patient portal literature and to identify recommendations and future directions for the design, implementation, and evaluation of portals. METHODS: To focus this review on salient contemporary issues, we elected to center it on four topics: (1) 21st Century Cures Act's impact on patient portals (e.g., Open Notes); (2) COVID-19's pandemic impact on portals; (3) proxy access to portals; and (4) disparities in portal adoption and use. We conducted targeted PubMed searches to identify recent empirical studies addressing these topics, used a two-part screening process to determine relevance, and conducted thematic analyses. RESULTS: Our search identified 174 unique papers, 74 were relevant empirical studies and included in this review. Among these papers, we identified 10 themes within our four a priori topics, including preparing for and understanding the consequences of increased patient access to their electronic health information (Cures Act); developing, deploying, and evaluating new virtual care processes (COVID-19); understanding current barriers to formal proxy use (proxy access); and addressing disparities in portal adoption and use (disparities). CONCLUSION: Our results suggest that the recent trends toward understanding the implications of immediate access to most test results, exploring ways to close gaps in portal adoption and use among different sub-populations, and finding ways to leverage portals to improve health and health care are the next steps in the maturation of patient portals and are key areas that require more research. It is important that health care organizations share their innovative portal efforts, so that successful measures can be tested in other contexts, and progress can continue.

Impact of notification policy on patient-before-clinician review of immediately released test results.

The 21st Century Cures Act mandates immediate availability of test results upon request. The Cures Act does not require that patients be informed of results, but many organizations send notifications when results become available. Our medical center implemented 2 sequential policies: immediate notifications for all results, and notifications only to patients who opt in. We used over 2 years of data from Vanderbilt University Medical Center to measure the effect of these policies on rates of patient-before-clinician result review and patient-initiated messaging using interrupted time series analysis. When releasing test results with immediate notification, the proportion of patient-before-clinician review increased 4-fold and the proportion of patients who sent messages rose 3%. After transition to opt-in notifications, patient-before-clinician review decreased 2.4% and patient-initiated messaging decreased 0.4%. Replacing automated notifications with an opt-in policy provides patients flexibility to indicate their preferences but may not substantially alleviate clinicians' messaging workload.

The decision aid is the easy part: workflow challenges of shared decision making in cancer care.

Delivering high-quality, patient-centered cancer care remains a challenge. Both the National Academy of Medicine and the American Society of Clinical Oncology recommend shared decision making to improve patient-centered care, but widespread adoption of shared decision making into clinical care has been limited. Shared decision making is a process in which a patient and the patient's health-care professional weigh the risks and benefits of different options and come to a joint decision on the best course of action for that patient on the basis of their values, preferences, and goals for care. Patients who engage in shared decision making report higher quality of care, whereas patients who are less involved in these decisions have statistically significantly higher decisional regret and are less satisfied. Decision aids can improve shared decision making-for example, by eliciting patient values and preferences that can then be shared with clinicians and by providing patients with information that may influence their decisions. However, integrating decision aids into the workflows of routine care is challenging. In this commentary, we explore 3 workflow-related barriers to shared decision making: the who, when, and how of decision aid implementation in clinical practice. We introduce readers to human factors engineering and demonstrate its potential value to decision aid design through a case study of breast cancer surgical treatment decision making. By better employing the methods and principles of human factors engineering, we can improve decision aid integration, shared decision making, and ultimately patient-centered cancer outcomes.

A Qualitative Study on Using Telemedicine for Precepting and Teaching in the Academic Setting.

PURPOSE: To examine the impact of telemedicine use on precepting and teaching among preceptors and patients during the COVID-19 pandemic. METHOD: The authors conducted a secondary analysis of a qualitative study focusing on providers' and patients' experiences with and attitudes toward telemedicine at 4 academic health centers. Teaching and precepting were emergent codes from the data and organized into themes. Themes were mapped to domains from the 2009 Consolidated Framework for Implementation Research (CFIR), a framework that assists with effective implementation and consists of 5 domains: intervention characteristics, outer settings, inner settings, characteristics of individuals, and process. RESULTS: In total, 86 interviews were conducted with 65 patients and 21 providers. Nine providers and 3 patients recounted descriptions related to teaching and precepting with telemedicine. Eight themes were identified, mapping across all 5 CFIR domains, with the majority of themes (n = 6) within the domains of characteristics of individuals, processes, and intervention characteristics. Providers and patients described how a lack of prepandemic telemedicine experience and inadequate processes in place to precept and teach with telemedicine affected the learning environment and perceived quality of care. They also discussed how telemedicine exacerbated existing difficulties in maintaining resident continuity. Providers described ways communication changed with telemedicine use during the pandemic, including having to wear masks while in the same room as the trainee and sitting closely to remain within range of the camera, as well as the benefit of observing trainees with the attending's camera off. Providers expressed a lack of protected structure and time for teaching and supervising with telemedicine, and a general view that telemedicine is here to stay. CONCLUSIONS: Efforts should focus on increasing knowledge of telemedicine skills and improving processes to implement telemedicine in the teaching setting in order to best integrate it into undergraduate and graduate medical education.

Building research capacity in primary care practices that serve predominantly racial and ethnic minority populations.

Primary care research represents only 1% of all federally funded projects. However, innovation in primary care is central to advancing health care delivery. Indeed, leaders in health care innovation recently called for primary care payment reform proposals to be tested in accountable care organizations (ACOs) consisting of independent practices (ie, practices not owned by hospitals). Yet these same practices may have less experience with the kind of systematic innovation that leads to generalizable insights, because what little funding is available for primary care research is mostly awarded to large academic medical centers. In this commentary, we report on lessons learned over 2 years (2020-2022) from conducting primary care research through a novel alliance of an ACO consisting of independent practices, a health plan, and several academic researchers, with the support of a private foundation. This collaboration is also notable because it was specifically assembled to address racial and ethnic inequities in the midst of the COVID-19 pandemic.

A Remote Symptom Monitoring Tool As Part of Ambulatory Cancer Surgery Recovery: A Qualitative Analysis of Patient Experience.

PURPOSE: Patients recovering from ambulatory cancer surgery at home may find it difficult to determine whether their postoperative symptoms are normal or potentially serious. We developed the Recovery Tracker to help patients navigate such issues. The Recovery Tracker is a 10-day, web-based electronic survey that monitors symptoms daily and provides feedback as to whether reported symptoms are expected or require follow-up. We sought to examine patient perceptions using this tool. METHODS: Semistructured interviews were conducted from August 2017 to September 2019 with a convenience sample of patients from a larger randomized controlled trial of the Recovery Tracker. Patients undergoing surgery at an ambulatory cancer center dedicated to the surgical treatment of breast, gynecologic, urologic, head, and neck cancers and benign tumors were included. Thematic analysis was applied to derive key themes and codes via NVivo qualitative analysis software. Recruitment was conducted iteratively until thematic saturation. RESULTS: Forty-three patients were interviewed. Interview responses were organized into five main themes: (1) The Recovery Tracker led to more seamless communication with the care team; (2) symptoms not expected or not listed on the Recovery Tracker caused stress; (3) the Recovery Tracker was perceived as an extension of care, prompting reflection about symptoms and recovery; (4) Enhanced Feedback provided reassurance and helped set expectations; and (5) the Recovery Tracker was easy to use. CONCLUSION: The patient experience of electronic symptom monitoring and feedback is congruent with the aims of such monitoring and feedback. Further qualitative research is required in more diverse populations.

The Telemedicine Experience in Primary Care Practices in the United States: Insights From Practice Leaders.

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.

Provider and Patient Experiences of Delays in Primary Care During the Early COVID-19 Pandemic.

BACKGROUND: The necessary suspension of nonacute services by healthcare systems early in the COVID-19 pandemic was predicted to cause delays in routine care in the United States, with potentially serious consequences for chronic disease management. However, limited work has examined provider or patient perspectives about care delays and their implications for care quality in future healthcare emergencies. OBJECTIVE: This study explores primary care provider (PCP) and patient experiences with healthcare delays during the COVID-19 pandemic. METHODS: PCPs and patients were recruited from four large healthcare systems in three states. Participants underwent semistructured interviews asking about their experiences with primary care and telemedicine. Data were analyzed using interpretive description. RESULTS: Twenty-one PCPs and 65 patients participated in interviews. Four main topics were identified: (1) types of care delayed, (2) causes for delays, (3) miscommunication contributing to delays, and (4) patient solutions to unmet care needs. CONCLUSIONS: Both patients and providers reported delays in preventive and routine care early in the pandemic, driven by healthcare system changes and patient concerns about infection risk. Primary care practices should develop plans for care continuity and consider new strategies for assessing care quality for effective chronic disease management in future healthcare system disruptions.

Patient and Provider Recommendations for Improved Telemedicine User Experience in Primary Care: A Multi-Center Qualitative Study.

Objective: The purpose of this study was to explore telemedicine use and obtain actionable recommendations to improve telemedicine user experience from a diverse group of patients and providers. Methods: We interviewed adult patients and primary care providers (PCPs) across three National Patient-Centered Clinical Research Network (PCORnet) sites in New York City, North Carolina, and Florida. Both patients and providers could participate via phone or videoconferencing; patients could complete the interview in English or Spanish. Spanish interviews were conducted by a member of the research team who spoke Spanish fluently. Interviews were audio-recorded, transcribed verbatim, and when necessary, professionally translated. Results: We interviewed 21 PCPs and 65 patients between March and October 2021. We found that patients' and providers' perspectives on ways to improve the telemedicine experience focused on three recommendation themes: (1) expectations of care provided via telemedicine, (2) innovations to support usability, and (3) alleviation of physician burden. Key recommendations were related to expectations regarding (1) care provided, for example, adding educational content for the patients, and clarity about long-term payment models; (2) support innovation to improve telemedicine usability, for example, providing patients with remote monitoring devices, integrating in-home testing and nursing evaluation; (3) and reduce physician burden, for example, virtual rooming, reimbursement of time spent outside of the telemedicine encounter. Discussion: Primary care patients and providers see merit in telemedicine. However, both groups recommended novel ways to improve the quality of care and user experience. Findings from this article suggest that policymakers would be best served by addressing current gaps in patient digital literacy by creating technical support strategies, and gaps in telemedicine reimbursement to present an equitable form of payment.

Perspectives of Physicians with Experience in Nursing Home Care on Telehealth Use During the COVID-19 Public Health Emergency.

BACKGROUND: Despite expanded access to telehealth services for Medicare beneficiaries in nursing homes (NHs) during the COVID-19 public health emergency, information on physicians' perspectives on the feasibility and challenges of telehealth provision for NH residents is lacking. OBJECTIVE: To examine physicians' perspectives on the appropriateness and challenges of providing telehealth in NHs. PARTICIPANTS: Medical directors or attending physicians in NHs. APPROACH: We conducted 35 semistructured interviews with members of the American Medical Directors Association from January 18 through January 29, 2021. Outcomes of the thematic analysis reflected perspectives of physicians experienced in NH care on telehealth use. MAIN MEASURES: The extent to which participants used telehealth in NHs, the perceived value of telehealth for NH residents, and barriers to telehealth provision. KEY RESULTS: Participants included 7 (20.0%) internists, 8 (22.9%) family physicians, and 18 (51.4%) geriatricians. Five common themes emerged: (1) direct care is needed to adequately care for residents in NHs; (2) telehealth may allow physicians to reach NH residents more flexibly during offsite hours and other scenarios when physicians cannot easily reach patients; (3) NH staff and other organizational resources are critical to the success of telehealth, but staff time is a major barrier to telehealth provision; (4) appropriateness of telehealth in NHs may be limited to certain resident populations and/or services; (5) conflicting views about whether telehealth use will be sustained over time in NHs. Subthemes included the role of resident-physician relationships in facilitating telehealth and the appropriateness of telehealth for residents with cognitive impairment. CONCLUSIONS: Participants had mixed views on the effectiveness of telehealth in NHs. Staff resources to facilitate telehealth and the limitations of telehealth for NH residents were the most raised issues. These findings suggest that physicians in NHs may not view telehealth as a suitable substitute for most in-person services.

Telemedicine Impact on the Patient-Provider Relationship in Primary Care During the COVID-19 Pandemic.

BACKGROUND: The COVID-19 pandemic has necessitated a rapid uptake of telemedicine in primary care requiring both patients and providers to learn how to navigate care remotely. This change can impact the patient-provider relationship that often defines care, especially in primary care. OBJECTIVE: This study aims to provide insight into the experiences of patients and providers with telemedicine during the pandemic, and the impact it had on their relationship. RESEARCH DESIGN: A qualitative study using thematic analysis of semistructured interviews. SUBJECTS: Primary care providers (n=21) and adult patients (n=65) with chronic disease across primary care practices in 3 National Patient-centered Clinical Research Network sites in New York City, North Carolina, and Florida. MEASURES: Experiences with telemedicine during the COVID-19 pandemic in primary care. Codes related to the patient-provider relationship were analyzed for this study. RESULTS: A recurrent theme was the challenge telemedicine posed on rapport building and alliance. Patients felt that telemedicine affected provider's attentiveness in varying ways, whereas providers appreciated that telemedicine provided unique insight into patients' lives and living situations. Finally, both patients and providers described communication challenges. CONCLUSIONS: Telemedicine has altered structure and process aspects of primary health care such as the physical spaces of encounters, creating a new setting to which both patients and providers must adjust. It is important to recognize the opportunities and limits that this new technology has to help providers maintain the type of one-on-one attention that patients expect and that contributes to relationship building.