Implementation and evaluation of a Project ECHO telementoring program for the Namibian HIV workforce.

BACKGROUND: The Namibian Ministry of Health and Social Services (MoHSS) piloted the first HIV Project ECHO (Extension for Community Health Outcomes) in Africa at 10 clinical sites between 2015 and 2016. Goals of Project ECHO implementation included strengthening clinical capacity, improving professional satisfaction, and reducing isolation while addressing HIV service challenges during decentralization of antiretroviral therapy. METHODS: MoHSS conducted a mixed-methods evaluation to assess the pilot. Methods included pre/post program assessments of healthcare worker knowledge, self-efficacy, and professional satisfaction; assessment of continuing professional development (CPD) credit acquisition; and focus group discussions and in-depth interviews. Analysis compared the differences between pre/post scores descriptively. Qualitative transcripts were analyzed to extract themes and representative quotes. RESULTS: Knowledge of clinical HIV improved 17.8% overall (95% confidence interval 12.2-23.5%) and 22.3% (95% confidence interval 13.2-31.5%) for nurses. Professional satisfaction increased 30 percentage points. Most participants experienced reduced professional isolation (66%) and improved CPD credit access (57%). Qualitative findings reinforced quantitative results. Following the pilot, the Namibia MoHSS Project ECHO expanded to over 40 clinical sites by May 2019 serving more than 140 000 people living with HIV. CONCLUSIONS: Similar to other Project ECHO evaluation results in the United States of America, Namibia's Project ECHO led to the development of ongoing virtual communities of practice. The evaluation demonstrated the ability of the Namibia HIV Project ECHO to improve healthcare worker knowledge and satisfaction and decrease professional isolation.

Evaluation of the National Sexually Transmitted Disease Curriculum: Reach, Utilization, and Engagement.

BACKGROUND: With increasing rates of sexually transmitted infections in the United States, there is a critical need to educate health professionals on the prevention, diagnosis, and treatment of sexually transmitted infections. The National Sexually Transmitted Disease Curriculum (NSTDC, https://www.std.uw.edu) is a free, online curriculum, funded by the Centers for Disease Control and Prevention. The purpose of this article is to evaluate the reach, utilization, and engagement of users with the curriculum. METHODS: Data on NSTDC utilization was collected for 24 months after the February 1, 2017 launch. For all users, Google Analytics was used to determine total number of users, geographic location, age and sex, and average session duration. For registered users, additional data analysis included work-role, demographics, and completion of self-study modules, check-on-learning questions, and question banks. User satisfaction was measured on a 5-point Likert scale. RESULTS: During the evaluation period, 136,270 individual users accessed the NSTDC, including 24,652 registered users. Among all registered users, 10,660 (43.2%) were registered nurses, 2810 (11.4%) physicians, 4942 (20.1%) Advanced Practice Nurses and Physician Assistants, and 6213 (25.2%) nonclinicians. Among registered users, 18,533 (75.2%) completed at least 1 module, 7898 (32.0%) completed all 7 modules, and 19,804 (80.4%) answered optional check-on-learning questions. Median satisfaction with the content was (5) very satisfied (interquartile range, 4-5). CONCLUSIONS: The NSTDC is a free, guideline-based, online curriculum with novel dual functionality that has achieved extensive reach with a broad array of health professionals who engage deeply with the material. The wide usage of NSTDC demonstrates the need for high-quality, unbiased, free content in user-focused formats.

Project ECHO: telementoring to educate and support prescribing of HIV pre-exposure prophylaxis by community medical providers.

Background Pre-exposure prophylaxis (PrEP) is an effective tool to prevent HIV infection for at-risk individuals, but access requires medical providers to be aware of and comfortable with prescribing PrEP. Project ECHO (Extension for Community Healthcare Outcomes) was started to support hepatitis C virus treatment in rural New Mexico, but has since expanded to train health practitioners to treat other medical conditions in other locations. METHODS: In 2012, a Project ECHO telehealth program was launched to mentor community HIV practitioners in our region. In July 2015, quarterly PrEP didactics and monthly PrEP case discussions were incorporated into this program. The result was a pilot PrEP telementoring intervention. An initial nine-question survey assessed baseline community practitioner knowledge and attitudes towards PrEP, and a follow-up 16-item survey 2 years later assessed the effect of Project ECHO on PrEP knowledge, concerns and prescribing practices. RESULTS: Twenty-four and 45 medical providers completed the baseline and follow-up surveys respectively. In follow-up, providers reported that Project ECHO participation helped them stay current on PrEP guidelines, improved knowledge, increased likelihood to prescribe PrEP and addressed most concerns about prescribing PrEP. One exception was continued concerns about cost and insurance access, which were addressed by adjusting the didactic curriculum. Many participants reported that the Project ECHO pilot PrEP telementoring intervention assisted them in disseminating PrEP knowledge to other medical providers in their region. CONCLUSIONS: It is feasible to incorporate PrEP training into Project ECHO distance telementoring programs as a tool to educate community practitioners and support PrEP prescribing.

Using an Innovative Telehealth Model to Support Community Providers Who Deliver Perinatal HIV Care.

Mountain West AETC (AIDS Education and Training Center) ECHO (Extension for Community Healthcare Outcomes), a longitudinal HIV telemen-toring program, connects community providers and a multidisciplinary specialist team at the University of Washington. The program employs focused lectures and real-time case discussions to educate and support providers in low-resource and rural settings. We assessed the impact of the program on management of perinatal HIV through surveying community providers who participate, and reviewing cases presented by providers for consultation. One hundred percent of providers who presented a perinatal HIV case for ECHO consultation reported that presentation "very much" impacted management of the case, and 93% of survey respondents reported that ECHO participation helped them stay up to date on national perinatal HIV guidelines. All 13 cases had the successful outcome of prevention of mother-to-child transmission of HIV. The ECHO model can effectively support and educate community providers who care for HIV-infected pregnant women.

Patient-driven N-of-1 in Parkinson's Disease. Lessons Learned from a Placebo-controlled Study of the Effect of Nicotine on Dyskinesia.

BACKGROUND: New insights and knowledge in biomedical science often come from observation and experimentation. Methods traditionally used include self-experimentation, case reports, randomised controlled trials, and N-of-1 studies. Technological advances have lead to an increasing number of individuals and patients engaging in self-tracking. We use the term patient-driven N-of-1 for self-tracking performed with the explicit intention to disseminate the results by academic publishing. OBJECTIVES: The aim of the study was to: 1) explore the potential role for patient-driven N-of-1 studies as a tool for improving self-management in Parkinson's disease (PD) using the example of managing levodopa-induced dyskinesia (LID) with nicotine, and 2) based on this example; identify some specific challenges of patient-driven N-of-1 studies. METHODS: We used a placebo controlled patient-driven N-of-1 study with nicotine administered via e-cigarette to treat LID. The first author initiated and conducted the experiment on herself and noted her observations. The evaluations of the potential of N-of-1 for improving self-management of PD as well as the effects of nicotine on dyskinesia were based on the perception of the subject. During the planning and undertaking of the experiment, notes were made to identify challenges specific to patient-driven N-of-1 studies. RESULTS: The subject was able to distinguish a decrease of her LID from nicotine but no effect from placebo. The main challenges of patient-driven N-of-1 studies were identified to be associated with planning of the study, recruiting a suitable research team, making sure the data collection is optimal, analysis of data, and publication of results. CONCLUSIONS: Our study indicates that nicotine administered via e-cigarette may have an effect on levodopa-induced dyskinesia in individual patients with PD. The main contribution is however highlighting the work done by patients on a daily basis for understanding their conditions and conducting self-tracking experiments. More work is needed to further develop methods around patient-driven N-of-1 studies for PD.

Impact of a Telehealth Program That Delivers Remote Consultation and Longitudinal Mentorship to Community HIV Providers.

Background. To increase human immunodeficiency virus (HIV) care capacity in our region, we designed a distance mentorship and consultation program based on the Project ECHO (Extension for Community Healthcare Outcomes) model, which uses real-time interactive video to regularly connect community providers with a multidisciplinary team of academic specialists. This analysis will (1) describe key components of our program, (2) report types of clinical problems for which providers requested remote consultation over the first 3.5 years of the program, and (3) evaluate changes in participants' self-assessed HIV care confidence and knowledge over the study period. Methods. We prospectively tracked types of clinical problems for which providers sought consultation. At baseline and regular intervals, providers completed self-efficacy assessments. We compared means using paired-samples t test and examined the statistical relationship between each survey item and level of participation using analysis of variance. Results. Providers most frequently sought consultation for changing antiretroviral therapy, evaluating acute symptomatology, and managing mental health issues. Forty-five clinicians completed a baseline and at least 1 repeat assessment. Results demonstrated significant increase (P < .05) in participants' self-reported confidence to provide a number of essential elements of HIV care. Significant increases were also reported in feeling part of an HIV community of practice and feeling professionally connected to academic faculty, which correlated with level of program engagement. Conclusions. Community HIV practitioners frequently sought support on clinical issues for which no strict guidelines exist. Telehealth innovation increased providers' self-efficacy and knowledge while decreasing professional isolation. The ECHO model creates a virtual network for peer-to-peer support and longitudinal mentorship, thus strengthening capacity of the HIV workforce.

Creating a National HIV Curriculum.

In recent years, the HIV care provider workforce has not kept pace with an expanding HIV epidemic. To effectively address this HIV workforce shortage, a multipronged approach is needed that includes high-quality, easily accessible, up-to-date HIV education for trainees and practicing providers. Toward this objective, the University of Washington, in collaboration with the AIDS Education and Training Center National Coordinating Resource Center, is developing a modular, dynamic curriculum that addresses the entire spectrum of the HIV care continuum. Herein, we outline the general principles, content, organization, and features of this federally funded National HIV Curriculum, which allows for longitudinal, active, self-directed learning, as well as real-time evaluation, tracking, and feedback at the individual and group level. The online curriculum, which is in development, will provide a free, comprehensive, interactive HIV training and resource tool that can support national efforts to expand and strengthen the United States HIV clinical care workforce.

Probing the benefits of real-time tracking during cancer care.

People with cancer experience many unanticipated symptoms and struggle to communicate them to clinicians. Although researchers have developed patient-reported outcome (PRO) tools to address this problem, such tools capture retrospective data intended for clinicians to review. In contrast, real-time tracking tools with visible results for patients could improve health outcomes and communication with clinicians, while also enhancing patients' symptom management. To understand potential benefits of such tools, we studied the tracking behaviors of 25 women with breast cancer. We provided 10 of these participants with a real-time tracking tool that served as a "technology probe" to uncover behaviors and benefits from voluntary use. Our findings showed that while patients' tracking behaviors without a tool were fragmented and sporadic, these behaviors with a tool were more consistent. Participants also used tracked data to see patterns among symptoms, feel psychosocial comfort, and improve symptom communication with clinicians. We conclude with design implications for future real-time tracking tools.

Catalyzing Social Support for Breast Cancer Patients.

Social support is a critical, yet underutilized resource when undergoing cancer care. Underutilization occurs in two conditions: (a) when patients fail to seek out information, material assistance, and emotional support from family and friends or (b) when family and friends fail to meet the individualized needs and preferences of patients. Social networks are most effective when kept up to date on the patient's status, yet updating everyone takes effort that patients cannot always put in. To improve this situation, we describe the results of our participatory design activities with breast cancer patients. During this process, we uncovered the information a social network needs to stay informed as well as a host of barriers to social support that technology could help break down. Our resulting prototype, built using Facebook Connect, includes explicit features to reduce these barriers and thus, promote the healthy outcomes associated with strong social support.

Transforming Clinic Environments into Information Workspaces for Patients.

Although clinic environments are a primary location for exchanging information with clinicians, patients experience these spaces as harsh environments to access, use, exchange, and manage information. In this paper, we present results from an ethnographic-inspired study of breast cancer patients actively interacting with information in clinic environments. Through observations and interviews, we observed information interactions in awkward physical positions; inefficient use of existing clinical space; separation of patients from their information and lack of support for collaborative document viewing. These factors compromised patients' abilities to manage their information work when they experienced bursts of information exchange, lack of advance information, fragmented attention, and heightened stress in clinic environments. To overcome these challenges, we identify formative strategies to focus attention, encourage collaboration, and improve communication in clinical settings.

Locating Patient Expertise in Everyday Life.

Coping with a new health issue often requires individuals to acquire knowledge and skills to manage personal health. Many patients turn to one another for experiential expertise outside the formal bounds of the health-care system. Internet-based social software can facilitate expertise sharing among patients, but provides only limited ways for users to locate sources of patient expertise. Although much prior research has investigated expertise location and systems to augment expertise sharing in workplace organizations, the transferability of this knowledge to other contexts, such as personal health, is unclear. Guided by expertise locating frameworks drawn from prior work, we conducted a field study to investigate expertise locating in the informal and everyday context of women diagnosed with breast cancer. Similarities between patients' expertise locating practices and practices of professionals in workplace organizations suggest similar support strategies could apply in both contexts. However, unlike professionals, unsolicited advice often triggered patients to locate expertise. They identified expertise through various forms of gatekeeping. The high-stakes nature of problems patients faced also led them to use triangulation strategies in anticipation of breakdowns in expertise location. Based on these key differences, we explored five design additions to social software that could support patients in their critical need to locate patient expertise.

Barriers to organizing information during cancer care: "I don't know how people do it.".

Patients need support to help them organize and manage the vast amount of health information they now receive, particularly in their increasingly active roles. Clinicians can be frustrated by the perceived failure of patients to use the information given to them, and patients express frustrations with the daunting organizational task of their health information. Yet, few studies have examined the barriers that patients face in organizing and thus effectively retrieving and using their health information. In this paper, we report on a qualitative, longitudinal field study of cancer patients in-situ organizing behavior where we uncovered four types of barriers to organizing: emotional, scalable, temporal, and functional. We provide detailed suggestions for how these barriers could be reduced by either technological or social changes. Our analysis of barriers provides empirical guidance for health-information providers, technology designers as well as patients and their caregivers.

The Invisible Work of Being a Patient and Implications for Health Care: "[the doctor is] my business partner in the most important business in my life, staying alive"

In a distributed system of care, patients shuffle among many clinicians and spend the majority of their time away from the treatment center. Although we see the results of patients' work (e.g., medication taken, arrived at appointment) we do not see the work itself. By failing to see this work, industry overlooks issues with vital implications for their business. To lift the veil of invisibility from patients' work, we conducted a longitudinal field study to uncover the invisible work breast cancer patients do to obtain information, bridge inter-institutional care, manage dependencies and resolve inconsistent recommendations. In this paper we provide detailed examples of this work and explore the impact on patients and health-care operations; identify patterns of work with implications for patient-centered research and design; and propose common information spaces to improve patients' work through designs that highlight dependencies, preserve state information, link recommendations to justifications, and track task progress.

Patients as actors: the patient's role in detecting, preventing, and recovering from medical errors.

PURPOSE: Patients have the most to gain from reducing medical errors; yet, little research has been done to investigate the role they could or already do play in detecting and preventing errors in their own health care. The purpose of this study is to examine patient's role in detecting, preventing, and recovering from medical errors in outpatient oncology. METHODS: In this paper, we use cognitive work analysis and Rasmussen's taxonomy of human performance to describe five cases of medical errors that occurred in an outpatient, cancer-care setting. We detail the role of the patient in each case, and analyze each role using constructs from previous studies of human behavior and errors. RESULTS: Observational data indicates that patients engage in a range of tasks that identify, prevent, and recover from medical errors in outpatient cancer care. The results of this study point to the importance of considering patients and their work in both the design of patient-care information systems and the structure of clinical-care environments that enable safe and effective health care.