Project GIVE: using a virtual genetics service platform to reduce health inequities and improve access to genomic care in an underserved region of Texas.

BACKGROUND: The utilization of genomic information to improve health outcomes is progressively becoming more common in clinical practice. Nonetheless, disparities persist in accessing genetic services among ethnic minorities, individuals with low socioeconomic status, and other vulnerable populations. The Rio Grande Valley (RGV) at the Texas-Mexico border is predominantly Hispanic/Latino with a high poverty rate and very limited access to genetic services. Funded by the National Center for Advancing Translational Sciences, Project GIVE (Genetic Inclusion by Virtual Evaluation) was launched in 2022 to reduce the time to diagnosis and increase provider knowledge of genomics in this region, with the goal of improving pediatric health outcomes. We describe our experience of establishing a virtual pediatric genomic service in this region to expeditiously identify, recruit, and evaluate pediatric patients with undiagnosed diseases. METHODS: We have utilized an innovative electronic health record (EHR) agnostic virtual telehealth and educational platform called Consultagene to receive referrals from healthcare providers in the RGV. Using this portal, genetic services, including virtual evaluation and genome sequencing (GS), are being delivered to children with rare diseases. The study has also integrated effective methods to involve and educate community providers through in-person meetings and Continuing Professional Education (CPE) events. RESULTS: The recruitment efforts have proven highly successful with the utilization of Consultagene in this medically underserved region. The project's ongoing engagement efforts with local healthcare providers have resulted in progressively more referrals to the study over time, thus improving inclusion and access to genomic care in the RGV. Additionally, the curated CPE content has been well received by healthcare providers in the region. CONCLUSIONS: Project GIVE study has allowed advanced genetic evaluation and delivery of GS through the virtual Consultagene portal, effectively circumventing the recognized socioeconomic and logistical barriers to accessing genetic services within this border community.

From the Field to the Patient: A Rural Food Recovery-Based Produce Rx Program.

Poor nutrition is a major risk factor for chronic diseases, and emerging produce prescription (PRx) programs are a growing approach to addressing gaps in diet quality to promote health. This article describes a food recovery-based PRx framework called Farm to Clinic (F2C). The F2C program includes a partnership between the North Carolina Association of Free and Charitable Clinics (NCAFCC), Society of Saint Andrews (SoSA), and a local food bank. Patients (n = 4,691) were rural, uninsured, and received care at one of three NCAFCC clinics in Eastern North Carolina. Student volunteers gathered gleaned and/or salvaged produce and delivered it to clinics and/or patients directly. Successes of the current model include complementing chronic disease management and health promotion in a cost-effective way that also assists with reducing food waste. In addition, the patients who participate in the program are connected with produce at their primary care clinic and do not have to drive to an additional community site for produce. Some challenges have included consistency with gleaning; therefore, the program has switched to primarily salvaged produce. Areas for expansion and improvement on the F2C model are also outlined and include incorporating a more prioritized eligibility criteria, provision of additional complimentary resources such as nutrition education and culinary support, as well as improved formal evaluation (e.g., use of food and clinical impact). Finally, the F2C model utilizes community partners that have been established nationwide which allows for replication of a framework in other geographic areas.

Reducing Time to Diagnosis of Rare Genetic Diseases in a Medically Underserved Hispanic Population- Lessons Learned for Meaningful Engagement.

Background: The utilization of genomic information to improve health outcomes is progressively becoming more common in clinical practice. Nonetheless, disparities persist in accessing genetic services among ethnic minorities, individuals with low socioeconomic status, and other vulnerable populations. The Rio Grande Valley at the Texas-Mexico border is predominantly Hispanic with a high poverty rate and an increased prevalence of birth defects, with very limited access to genetics services. The cost of a diagnosis is often times out of reach for these underserved families. Funded by the National Center for Advancing Translational Sciences (NCATS), Project GIVE (Genetic Inclusion by Virtual Evaluation) was launched in 2022 to shorten the time to diagnosis and alleviate healthcare inequities in this region, with the goal of improving pediatric health outcomes. Methods: Utilizing Consultagene, an innovative electronic health record (EHR) agnostic virtual telehealth and educational platform, we designed the study to recruit 100 children with rare diseases over a period of two years from this region, through peer-to-peer consultation and referral. Conclusions: Project GIVE study has allowed advanced genetic evaluation and delivery of genome sequencing through the virtual portal, effectively circumventing the recognized socioeconomic and other barriers within this population. This paper explores the successful community engagement process and implementation of an alternate genomics evaluation platform and testing approach, aiming to reduce the diagnostic journey for individuals with rare diseases residing in a medically underserved region.

Patients' Perspectives of Factors That Influence Pharmacogenetic Testing Uptake: Enhancing Patient Counseling and Results Dissemination.

Patient preferences for pharmacogenetic (PGx) counseling, testing and results dissemination are not well-established, especially in medically underserved Black and Latino populations. The aim of this study was to capture the preferences of Black and Latino patients who received PGx testing to ascertain: (1) factors enhancing their willingness to do testing and (2) preferences for the dissemination of results. Using the constant comparative method, we thematically analyzed interviews with 13 patients from medically underserved populations who had undergone PGx testing. The findings describe participants wanting better medication options, receiving a clear explanation about the testing, valuing or having an interest in science or medicine and having misconceptions about testing results as factors affecting one's willingness to undergo PGx testing. Additionally, patients confirmed preferring receiving results of PGx testing in a sharable format and described the significance of discussing results in a clinical appointment. The findings provide insight into what Black and Latino patients may prefer in terms of clinical implementation of PGx testing. These results can be utilized for tailoring future implementation of PGx testing and informing best pre- and post-test patient counseling and education practices.

Using a human-centered, mixed methods approach to understand the patient waiting experience and its impact on medically underserved Populations.

PURPOSE: To use a mixed methods approach to investigate the patient waiting experience for a medically underserved population at an outpatient surgical clinic. METHODS: We used lean methodology to perform 96 time-tracked observations of the patient journey in clinic, documenting the duration of activities from arrival to departure. We also used human-centered design (HCD) to perform and analyze 43 semi-structured interviews to understand patients' unmet needs. RESULTS: Patients spent an average of 68.5% of their total clinic visit waiting to be seen. While the average visit was 95.8 minutes, over a quarter of visits (27%) were over 2 hours. Patients waited an average of 24.4 minutes in the waiting room and 41.2 minutes in the exam room; and only spent 19.7% of their visit with an attending provider and 11.8% with a medical assistant. Interviews revealed that patients arrive to their visit already frustrated due to difficulties related to scheduling and attending their appointment. This is exacerbated during the visit due to long wait times, perceived information opacity, and an uncomfortable waiting room, resulting in frustration and anxiety. CONCLUSIONS: While time tracking demonstrated that patients spend a majority of their visit waiting to be seen, HCD revealed that patient frustrations span the waiting experience from accessing the appointment to visit completion. These combined findings are crucial for intervention design and implementation for medically underserved populations to improve the quality and experience with healthcare and also address system inefficiencies such as long wait times.

A comparison of the COVID-19 response for urban underserved patients experiencing healthcare transitions in three Canadian cities.

OBJECTIVES: The COVID-19 pandemic and response has highlighted existing strengths within the system of care for urban underserved populations, but also many fault lines, in particular during care transitions. The objectives of this study were to describe COVID-19 response policies for urban underserved populations in three Canadian cities; examine how these policies impact continuity of care for urban underserved populations; determine whether and how urban underserved community members were engaged in policy processes; and develop policy and operational recommendations for optimizing continuity of care for urban underserved populations during public health crises. METHODS: Using Walt & Gilson's Policy Triangle framework as a conceptual guide, 237 policy and media documents were retrieved. Five complementary virtual group interview sessions were held with 22 front-line and lived-experience key informants to capture less well-documented policy responses and experiences. Documents and interview transcripts were analyzed inductively for policy content, context, actors, and processes involved in the pandemic response. RESULTS: Available documents suggest little focus on care continuity for urban underserved populations during the pandemic, despite public health measures having disproportionately negative impacts on their care. Policy responses were largely reactive and temporary, and community members were rarely involved. However, a number of community-based initiatives were developed in response to policy gaps. Promising practices emerged, including examples of new multi-level and multi-sector collaboration. CONCLUSION: The pandemic response has exposed inequities for urban underserved populations experiencing care transitions; however, it has also exposed system strengths and opportunities for improvement to inform future policy direction.

RéSUMé: OBJECTIFS: La pandémie et la riposte au COVID-19 ont mis en évidence les forces existantes au sein du système de soins pour les populations urbaines mal desservies, mais aussi de nombreuses faillites, en particulier lors des transitions de soins. Les objectifs de cette étude étaient de décrire les politiques de réponse au COVID-19 pour les populations urbaines mal desservies dans trois villes canadiennes; examiner l'impact de ces politiques sur la continuité des soins pour les populations urbaines mal desservies; déterminer si et comment les membres de la communauté urbaine mal desservie ont été impliqués dans les processus politiques; et développer des recommandations politiques et opérationnelles pour optimiser la continuité des soins pour les populations urbaines mal desservies pendant les crises de santé publique. MéTHODES: Utilisant le cadre Policy Triangle de Walt et Gilson comme guide conceptuel, 237 documents politiques et des médias ont été récupérés. Cinq séances d'entrevues de groupe virtuelles complémentaires ont été organisées avec 22 informateurs clés de première ligne et d'expérience vécue pour saisir des réponses et des expériences politiques moins bien documentées. Les documents et les transcriptions des entrevues ont été analysés de manière inductive pour le contenu politique, le contexte, les acteurs et les processus impliqués dans la riposte à la pandémie. RéSULTATS: Les documents disponibles suggèrent que l'accent est peu mis sur la continuité des soins pour les populations urbaines mal desservies pendant la pandémie, malgré les mesures de santé publique ayant des impacts négatifs disproportionnés sur leurs soins. Les réponses politiques étaient en grande partie réactives et temporaires, et les membres de la communauté étaient rarement impliqués. Cependant, un certain nombre d'initiatives communautaires ont été élaborées en réponse aux lacunes des politiques. Des pratiques prometteuses ont émergé, y compris des exemples de nouvelles collaborations multiniveaux et multisectorielles. CONCLUSION: La réponse à la pandémie a révélé des inégalités pour les populations urbaines mal desservies qui subissent des transitions de soins, mais elle a également exposé les forces du système et les possibilités d'amélioration pour éclairer l'orientation future des politiques.

Screening Mammogram Adherence in Medically Underserved Women: Does Language Preference Matter?

This study examines the relationship between language preference and screening mammogram adherence in medically underserved women in New York City. A survey was conducted with 518 women age 40 and over attending breast health education programs in English, Spanish, Chinese (Mandarin/Cantonese), and French. Women who preferred Chinese were 53% less likely to have had a mammogram within the past year compared to women who preferred English (p < .01). Women age 75 and older (p < .0001) and those without insurance (p < .05) were also found to be significantly less likely to have had a screening mammogram compared to women ages 55-74 and those with private insurance, respectively. This research indicates medically underserved women who prefer a non-English language may benefit from linguistically appropriate interventions to improve screening mammogram adherence. Future research should examine appropriateness of breast cancer screening for women age 75 and older and explore ways to improve screening mammogram use in the uninsured population.

The impact of yoga in medically underserved populations: A mixed-methods study.

OBJECTIVES: We evaluated the acceptability, access, and impact of yoga among participants in yoga classes co-located in community health centers. DESIGN: Participants were invited to complete a mixed-methods program evaluation consisting of a pre/post survey at their first class and structured interviews at 4 months. SETTING: The study took place at two community health centers on the South Side of Chicago, IL, USA. INTERVENTIONS: Four weekly 1-1.5 hour yoga classes were provided by four certified yoga instructors trained to teach to all ability levels. MEASURES: Our primary outcome measures were pain and stress before and after the first class, and at 4-months. We gathered data about participant demographics, their health problems, how they accessed the classes, and motivations and barriers to attending. We also extracted themes from participants' qualitative feedback about their experiences. RESULTS: Overall, 70 participants completed the initial surveys; 44 completed the 4-month interviews. A racially and ethnically diverse group of middle- and low-income adult patients and community members attended, with flyers and word of mouth the major routes to the class. A single yoga class provided statistically significant decreases in pain and stress, but these benefits were not demonstrated at the 4-month follow-up. The primary motivators for yoga class attendance were stress relief, exercise, and overall health improvement. Primary barriers included family issues, schedule, illness, and work conflicts. Primary benefits included physical benefits, relaxation, emotional benefits, and community connectedness. CONCLUSIONS: Co-locating yoga classes in community health centers provides a variety of benefits and is a viable pathway to addressing disparities in yoga access.

Impact of a Plant-Based Diet and Support on Mitigating Type 2 Diabetes Mellitus in Latinos Living in Medically Underserved Areas.

PURPOSE: To determine the impact that a high-fiber, low-fat diet, derived from mostly plant-based sources, when coupled with support has upon self-management of type 2 diabetes mellitus in Latinos from medically underserved areas (MUAs). DESIGN: Experimental randomized controlled community pilot study. SETTING: Three community clinics in MUAs located within San Bernardino County, California. PARTICIPANTS: Thirty-two randomly assigned Latinos with A1C greater than 6.4: 15 control and 17 experimental. INTERVENTION: Participants completed a 5-week education program. Researchers provided follow-up support for 17 randomly assigned experimental group participants through focus groups held at participating clinics-1, 3, and 6 months posteducation. MEASURES: Changes in fat and fiber consumption were measured using a modified Dietary Screener for Mexican Americans. Self-management was measured through the Self-Efficacy for Exercise Scale and Diabetes Quality of Life Measure. ANALYSIS: Baseline characteristics for both groups were analyzed using independent t tests and χ2 tests. A 2-way repeated-measures analysis of variance was used to analyze biometric data between baseline and 6 months for both groups. RESULTS: Mean A1C levels decreased from baseline to 6 months for both groups: control, µ1 = 9.57, µ2 = 9.49; experimental, µ1 = 8.53, µ2 = 7.31. CONCLUSION: The experimental group demonstrated a statistically significant reduction in mean A1C levels ( P = .002) when compared to the control group.

Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence.

The current study sought to better understand the experience of individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating illness. Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of participants were interested in specialist care. Participants cited geographic and financial barriers as most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly exceeded satisfaction with non-specialist care. These findings suggested that individuals with ME and CFS represent a medically-underserved population, due to lack of available care. The CFS Advisory Committee and NIH Pathways to Prevention Working Group recommended the creation of ME and CFS Centers of Excellence to improve the healthcare access of patients with ME and CFS. The current study documents the need for these centers, as they would ameliorate geographic and financial barriers to quality care.

An Assessment of Climate Change Impacts on Los Angeles (California USA) Hospitals, Wildfires Highest Priority.

Introduction Although many studies have delineated the variety and magnitude of impacts that climate change is likely to have on health, very little is known about how well hospitals are poised to respond to these impacts. Hypothesis/Problem The hypothesis is that most modern hospitals in urban areas in the United States need to augment their current disaster planning to include climate-related impacts. METHODS: Using Los Angeles County (California USA) as a case study, historical data for emergency department (ED) visits and projections for extreme-heat events were used to determine how much climate change is likely to increase ED visits by mid-century for each hospital. In addition, historical data about the location of wildfires in Los Angeles County and projections for increased frequency of both wildfires and flooding related to sea-level rise were used to identify which area hospitals will have an increased risk of climate-related wildfires or flooding at mid-century. RESULTS: Only a small fraction of the total number of predicted ED visits at mid-century would likely to be due to climate change. By contrast, a significant portion of hospitals in Los Angeles County are in close proximity to very high fire hazard severity zones (VHFHSZs) and would be at greater risk to wildfire impacts as a result of climate change by mid-century. One hospital in Los Angeles County was anticipated to be at greater risk due to flooding by mid-century as a result of climate-related sea-level rise. CONCLUSION: This analysis suggests that several Los Angeles County hospitals should focus their climate-change-related planning on building resiliency to wildfires. Adelaine SA , Sato M , Jin Y , Godwin H . An assessment of climate change impacts on Los Angeles (California USA) hospitals, wildfires highest priority. Prehosp Disaster Med. 2017;32(5):556-562.