Impact of Comprehensive Health Insurance on Quality of Life in Low-Income Hispanic Men with Prostate Cancer.

OBJECTIVE: To evaluate the effect of the transition from IMPACT, a disease-focused treatment program, to comprehensive health insurance under Medicaid through the Affordable Care Act (ACA) on general and prostate cancer-specific quality of life (QoL) on a cohort of previously uninsured low-income men. We hypothesize that general QoL would improve and prostate cancer-specific QoL would remain the same after the transition to comprehensive health insurance. METHODS: We assessed and compared general QoL using the RAND SF-12v2™ (12-Item Short Form Survey, version 2) and prostate cancer-specific QoL using the UCLA PCI (Prostate Cancer Index) one year before, at, and one year after the transition between 30 men who transitioned to comprehensive insurance (newly insured/Medicaid group) and 54 men who remained in the prostate cancer program (uninsured/IMPACT group). We assessed the independent effects of Medicaid coverage on QoL outcomes using repeated-measures regression. RESULTS: Our cohort was composed primarily of Hispanic men (82%). At transition, patient demographics and clinical characteristics were similar between the groups. General and prostate cancer-specific QoL did not differ between the groups and remained stable over time, Radical prostatectomy as primary treatment and shorter time since treatment were associated with worse urinary and sexual function across both groups and over all three time points. CONCLUSION: Those who transitioned to full-scope insurance and those who remained in the free prostate cancer-focused treatment program had stable general and prostate cancer-specific QoL. High-touch navigation aspects of a disease-focused program may have contributed to stability in outcomes.

Comprehension, utility, and preferences of prostate cancer survivors for visual timelines of patient-reported outcomes co-designed for limited graph literacy: meters and emojis over comics.

OBJECTIVE: Visual timelines of patient-reported outcomes (PRO) can help prostate cancer survivors manage longitudinal data, compare with population averages, and consider future trajectories. PRO visualizations are most effective when designed with deliberate consideration of users. Yet, graph literacy is often overlooked as a design constraint, particularly when users with limited graph literacy are not engaged in their development. We conducted user testing to assess comprehension, utility, and preference of longitudinal PRO visualizations designed for prostate cancer survivors with limited literacy. MATERIALS AND METHODS: Building upon our prior work co-designing longitudinal PRO visualizations with survivors, we engaged 18 prostate cancer survivors in a user study to assess 4 prototypes: Meter, Words, Comic, and Emoji. During remote sessions, we collected data on prototype comprehension (gist and verbatim), utility, and preference. RESULTS: Participants were aged 61-77 (M = 69), of whom half were African American. The majority of participants had less than a college degree (95%), had inadequate health literacy (78%), and low graph literacy (89%). Among the 4 prototypes, Meter had the best gist comprehension and was preferred. Emoji was also preferred, had the highest verbatim comprehension, and highest rated utility, including helpfulness, confidence, and satisfaction. Meter and Words both rated mid-range for utility, and Words scored lower than Emoji and Meter for comprehension. Comic had the poorest comprehension, lowest utility, and was least preferred. DISCUSSION: Findings identify design considerations for PRO visualizations, contributing to the knowledge base for visualization best practices. We describe our process to meaningfully engage patients from diverse and hard-to-reach groups for remote user testing, an important endeavor for health equity in biomedical informatics. CONCLUSION: Graph literacy is an important design consideration for PRO visualizations. Biomedical informatics researchers should be intentional in understanding user needs by involving diverse and representative individuals during development.

Mechanisms for Community Health Worker Action on Patient-, Institutional-, and Community-Level Barriers to Primary Care in a Safety-Net Setting.

Medically and socially complex patients disproportionately face barriers to primary care, contributing to health inequities and higher health care costs. This study elicited perspectives on how community health workers (CHWs) act upon barriers to primary care in 5 patient (n = 25) and 3 CHW focus groups (n = 17). Participants described how CHWs acted on patient-level barriers through social support, empowerment, and linkages, and system-level barriers by enhancing care team awareness of patient circumstances, optimizing communication, and advocating for equitable treatment. Limitations existed for influencing entrenched community-level barriers. CHWs, focusing on patient preferences, motivators, and circumstances, intervened on multilevel barriers to primary care, including advocacy for equitable treatment. These mechanisms have implications for existing CHW conceptual models.

The Development of a Novel, Standards-Based Core Curriculum for Community Facing, Clinic-Based Community Health Workers.

Introduction: Historically, CHW trainings have been developed to support community-based CHWs. When CHWs have been trained to engage with patients, typically such trainings have been for short term grant funded projects, focusing on a specific health intervention and not for long term, ongoing engagement of CHWs employed in clinical settings. To the best of our knowledge, this is the first such effort to describe the development of a standards-based training curriculum for clinic-based CHWs using a novel conceptual framework. Methods: Our conceptual approach for curricular development has several innovative features including: (1) a foundational consultation process with CHW national experts to inform curricular development approach, process and content; (2) utilization of the CHW Consensus Project (C3 Project) to provide curricular standards and guide learning objectives; (3) integration of three key stakeholder group perspectives (patients, healthcare teams, and healthcare systems); (4) use of popular education principles, aiming to foster a collaborative learning process; (5) integration of adult learning principles which build on learners' experiences, culminating in a modified apprenticeship model and (6) collaboration with clinical partners throughout planning and development of the curriculum. Results: The resulting standards-based curriculum is comprised of 10 modules, which span three areas of focus: (1) Establishing a professional CHW identity and competencies; (2) Outlining the context, processes and key actors in health care settings with whom CHWs will engage; and (3) Identifying the main forces that shape health and health care outcomes of patients/families and communities. Discussion: We highlight four lessons from our curriculum development process that may help other such efforts. First, curricular development should utilize CHW standards, existing training materials, and community-focused principles to inform curricular content and learning outcomes. Second, curricula should support training delivery using experience-based, participatory approaches, consistent with adult education and popular education principles. Third, training development for clinical settings should also draw from clinical CHW experiences and input. Fourth, curricula should support training for key stakeholders and champions in clinical organizations to improve organizational readiness for integrating CHWs into healthcare teams and health systems. Our results contribute to growing research on effective CHW training methods for clinical settings.

How Can We Help Alleviate the Financial Concerns of Non-Directed (Altruistic) Living Kidney Donors?

INTRODUCTION: The recent increase in non-directed donors (NDDs) in the United States (U.S.) may help reduce the overwhelming number of patients on the waitlist. However, non-directed donation may be limiting its full potential. Out-of-pocket donation costs upward of $8,000 may be a barrier to potential donors with altruistic tendencies, but inadequate financial support. This study aimed to describe the financial concerns of 31 U.S. NDDs. METHODS: We conducted qualitative interviews and administered quantitative demographic surveys between April 2013 and April 2015. Interview transcripts were analyzed using grounded theory techniques to describe and expand on themes relevant to the NDD experience. FINDINGS: We identified 4 sub-themes related to the theme of financial concerns: (1) direct costs related to transportation, lodging, and parking, (2) indirect costs of lost wages encountered from taking time off work to recover from surgery, (3) sources of financial support, and (4) suggestions for alleviating donor financial burden. Two thirds of participants (20) expressed concerns about direct and indirect donation costs. 11 NDDs reported the negative impact of direct costs,15 NDDs had concerns about indirect costs; only 7 donors received supplemental financial support from state mandates and transplant programs. DISCUSSION: Understanding the financial concerns of NDDs may guide improvements in the NDD donation experience that could support individuals who are interested in donating but lack the financial stability to donate. Removing financial disincentives may help increase nondirected donation rates, increase the living donor pool, and the number of kidneys available for transplantation.

Patient Stories Can Make a Difference in Patient-Centered Research Design.

Amid increasing interest in improving the patient-centeredness of research, new forms of engagement are emerging that enable researchers to get input from community members on research goals, methods, and implementation. This input often includes stories, which are useful for understanding lived experiences of illness and encounters with health care organizations, and for locating these experiences within larger meta-narratives of specific communities. We analyzed the stories in transcripts of 13 Community Engagement Studios and identified 4 major functions that the stories served in the sessions. Major functions included: (1) establishing mutual understanding, (2) adding expansion and depth, (3) characterizing abstract concepts, and (4) providing context for experience, with the latter being the most frequent. We assert that stories can serve to better communicate the complex contexts of patient experiences, helping to align research priorities and research design with community interests, leading to more patient-centered innovations in clinical practice.

Talk to PAPA: A Systematic Review of Patient/Participant (PAPA) Feedback on Interactions With Community Health Workers Using a Depth Analysis Approach.

Because of their shared backgrounds, community health workers' (CHWs) care of patients/program participants (PAPAs) is assumed to be acceptable, and often not evaluated empirically. Using PRISMA guidelines, we reviewed 9560 articles from 5 databases, selected 37 articles for full-text review, and developed a 5-dimensional depth analysis (focus, context, meaning, range, and voices) to characterize quality/quantity of PAPA feedback. Depth analyses clarified a spectrum of PAPA responses from extremely positive to ambivalence to outright distrust and frustration with perceived CHW limitations. Designing evaluations with 5-dimensional depth analysis can enhance PAPA feedback quality and improve evidence-based, patient-centered, CHW care delivery.

Researcher perspectives on embedding community stakeholders in T1-T2 research: A potential new model for full-spectrum translational research.

Effective community engagement in T3-T4 research is widespread, however, similar stakeholder involvement is missing in T1-T2 research. As part of an effort to embed community stakeholders in T1-T2 research, an academic community partnered team conducted discussion groups with researchers to assess perspectives on (1) barriers/challenges to including community stakeholders in basic science, (2) skills/training required for stakeholders and researchers, and (3) potential benefits of these activities. Engaging community in basic science research was perceived as challenging but with exciting potential to incorporate "real-life" community health priorities into basic research, resulting in a new full-spectrum translational research model.

Understanding the Knowledge Gap Experienced by U.S. Safety Net Patients in Teleretinal Screening.

Safety-net patients' socioeconomic barriers interact with limited digital and health literacies to produce a "knowledge gap" that impacts the delivery of healthcare via telehealth technologies. Six focus groups (2 African- American and 4 Latino) were conducted with patients who received teleretinal screening in a U.S. urban safety-net setting. Focus groups were analyzed using a modified grounded theory methodology. Findings indicate that patients' knowledge gap is primarily produced at three points during the delivery of care: (1) exacerbation of patients' pre-existing personal barriers in the clinical setting; (2) encounters with technology during screening; and (3) lack of follow up after the visit. This knowledge gap produces confusion, potentially limiting patients' perceptions of care and their ability to manage their own care. It may be ameliorated through delivery of patient education focused on both disease pathology and specific role of telehealth technologies in disease management.

Stigma and On-line Health Information Seeking of U.S. South Asian Cancer Survivors.

The internet has replaced physicians as primary health information source for cancer-survivors.It is important to uncover barriers/facilitators to cancer information seeking, particularly on-line.Asian Americans are the fastest growing U.S racial/ethnic minority, 2) cancer is the leading cause of r death and 3) cancer knowledge is low among them and little research is done on their cancer information seeking strategies. This study aims to examine qualitatively cancer information-seeking patterns of the Asian American group, South Asians, using in-depth interview methods. Family members and social networks are highly engaged in providing informational support to South Asian cancer survivors. such collaborative information seeking is limited by stigma related to cancer and must be taken into consideration when developing culturally appropriate cancer health information seeking interventions in such communities.

"Whatever I have, I have made by coming into this profession": the intersection of resources, agency, and achievements in pathways to sex work in Kolkata, India.

This article investigated the complex interplay of choice, socioeconomic structural factors, and empowerment influencing engagement in sex work. The analysis was focused on pathways into and reasons for staying in sex work from in-depth qualitative interviews with participants (n = 37) recruited from the Durbar community-led structural intervention in Kolkata, India. Kabeer's theory of empowerment focused on resources, agency, and achievements was utilized to interpret the results. Results identified that contexts of disempowerment constraining resources and agency set the stage for initiating sex work, typically due to familial poverty, loss of a father or husband as a breadwinner, and lack of economic opportunities for women in India. Labor force participation in informal sectors was common, specifically in domestic, construction, and manufacturing work, but was typically insufficient to provide for families and also often contingent on sexual favors. The availability of an urban market for sex work served as a catalyst or resource, in conjunction with Durbar's programmatic resources, for women to find and exercise agency and achieve financial and personal autonomy not possible in other work or as dependents on male partners. Resources lost in becoming a sex worker due to stigma, discrimination, and rejection by family and communities were compensated for by achievements in gaining financial and social resources, personal autonomy and independence, and the ability to support children and extended family. Durbar's programs and activities (e.g., savings and lending cooperative, community mobilization, advocacy) function as empowering resources that are tightly linked to sex workers' agency, achievements, and sex work pathways.

A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.

Understanding the digital divide in the clinical setting: the technology knowledge gap experienced by US safety net patients during teleretinal screening.

Differential access to everyday technology and healthcare amongst safety net patients is associated with low technological and health literacies, respectively. These low rates of literacy produce a complex patient "knowledge gap" that influences the effectiveness of telehealth technologies. To understand this "knowledge gap", six focus groups (2 African-American and 4 Latino) were conducted with patients who received teleretinal screenings in U.S. urban safety-net settings. Findings indicate that patients' "knowledge gap" is primarily produced at three points: (1) when patients' preexisting personal barriers to care became exacerbated in the clinical setting; (2) through encounters with technology during screening; and (3) in doctor-patient follow-up. This "knowledge gap" can produce confusion and fear, potentially affecting patients' confidence in quality of care and limiting their disease management ability. In rethinking the digital divide to include the consequences of this knowledge gap faced by patients in the clinical setting, we suggest that patient education focus on both their disease and specific telehealth technologies deployed in care delivery.

Evaluating predictive modeling's potential to improve teleretinal screening participation in urban safety net clinics.

INTRODUCTION: Screening guidelines for diabetic patients recommend yearly eye examinations to detect diabetic retinopathy and other forms of diabetic eye disease. However, annual screening rates for retinopathy in US urban safety net settings remain low. METHODS: Using data gathered from a study of teleretinal screening in six urban safety net clinics, we assessed whether predictive modeling could be of value in identifying patients at risk of developing retinopathy. We developed and examined the accuracy of two predictive modeling approaches for diabetic retinopathy in a sample of 513 diabetic individuals, using routinely available clinical variables from retrospective medical record reviews. Bayesian networks and radial basis function (neural) networks were learned using ten-fold cross-validation. RESULTS: The predictive models were modestly predictive with the best model having an AUC of 0.71. DISCUSSION: Using routinely available clinical variables to predict patients at risk of developing retinopathy and to target them for annual eye screenings may be of some usefulness to safety net clinics.

Factors shaping effective utilization of health information technology in urban safety-net clinics.

Urban safety-net clinics are considered prime targets for the adoption of health information technology innovations; however, little is known about their utilization in such safety-net settings. Current scholarship provides limited guidance on the implementation of health information technology into safety-net settings as it typically assumes that adopting institutions have sufficient basic resources. This study addresses this gap by exploring the unique challenges urban resource-poor safety-net clinics must consider when adopting and utilizing health information technology. In-depth interviews (N = 15) were used with key stakeholders (clinic chief executive officers, medical directors, nursing directors, chief financial officers, and information technology directors) from staff at four clinics to explore (a) nonhealth information technology-related clinic needs, (b) how health information technology may provide solutions, and (c) perceptions of and experiences with health information technology. Participants identified several challenges, some of which appear amenable to health information technology solutions. Also identified were requirements for effective utilization of health information technology including physical infrastructural improvements, funding for equipment/training, creation of user groups to share health information technology knowledge/experiences, and specially tailored electronic billing guidelines. We found that despite the potential benefit that can be derived from health information technologies, the unplanned and uninformed introduction of these tools into these settings might actually create more problems than are solved. From these data, we were able to identify a set of factors that should be considered when integrating health information technology into the existing workflows of low-resourced urban safety-net clinics in order to maximize their utilization and enhance the quality of health care in such settings.

Autonomy versus automation: perceptions of nonmydriatic camera choice for teleretinal screening in an urban safety net clinic.

OBJECTIVE: Teleretinal screening with nonmydriatic cameras has been presented as a means of increasing the number of patients assessed for diabetic retinopathy in urban safety net clinics. It has been hypothesized that automated nonmydriatic cameras may improve screening rates by reducing the learning curve for camera use. In this article, we examine the impact of introducing automated nonmydriatic cameras to urban safety net clinics whose photographers had previously used manual cameras. MATERIALS AND METHODS: We evaluated the impact of manual and automated digital nonmydriatic cameras on teleretinal screening using a quantitative analysis of readers' image quality ratings as well as a qualitative analysis, through in-depth interviews, of photographers' experiences. RESULTS: With the manual camera, 68% of images were rated "adequate" or better, including 24% rated "good" and 20% rated "excellent." With the automated camera, 61% were rated "adequate" or better, including 9% rated "good" and 0% rated "excellent." Photographers expressed frustration with their inability to control image-taking settings with the automated camera, which led to unexpected delays. CONCLUSIONS: For safety net clinics in which medical assistants are already trained to take photographs for diabetic retinopathy screening with a manual camera, the introduction of automated cameras may lead to frustration and paradoxically contribute to increased patient wait times. When photographers have achieved a high degree of aptitude with manual cameras and value the control they have over camera features, the introduction of automated cameras should be approached with caution and may require extensive training to increase user acceptability.

A comparison of MSM stigma, HIV stigma and depression in HIV-positive Latino and African American men who have sex with men (MSM).

Little research has examined differences in HIV stigma versus MSM stigma and the role of these stigmas in depression for HIV-positive Latino and African American men who have sex with men (MSM), subgroups disproportionately impacted by HIV in the US. MSM stigma, HIV stigma, depression, stress and social support were examined among HIV-positive Latino (n = 100) and African American (n = 99) MSM patients at five HIV clinics in Los Angeles County, California. In multiple regression models, Latino MSM had higher HIV stigma scores (p = 0.002) but lower MSM stigma scores (p < 0.001) compared to African American MSM. General support and stress were associated with HIV stigma (p < 0.001), but not MSM stigma. Both HIV stigma (p < 0.0001) and MSM stigma (p < 0.0001) were associated with depression. These data underscore the differences in experienced stigma for Latino and African American MSM and can be used to shape effective stigma reduction programs and behavioral counseling.

Using animation as an information tool to advance health research literacy among minority participants.

Lack of adequate consumer health information about clinical research contributes to health disparities among low health literate minority multicultural populations and requires appropriate methods for making information accessible. Enhancing understanding of health research can enable such minority multicultural consumers to make informed, active decisions about their own health and research participation. This qualitative study examines the effectiveness and acceptability of an animated video to enhance what we call health research literacy among minority multicultural populations. A team analyzed the transcripts of 58 focus groups of African Americans, Latinos, Native Hawaiians, and Filipinos in Los Angeles/Hawaii. Participants were accepting of animation and the video's cultural appropriateness. Communicating information about health research via animation improved participants' ability to identify personal information-gaps, engage in meaningful community-level dialogue, and ask questions about health research.