Access Challenges Research Articles

Stakeholder perceptions of issues and possible solutions to access to oncology medicines: a case study of multi-stakeholder engagement

Aim This case study reports on a series of multi-stakeholder dialogues on challenges to access to oncology medicines in both the public and private sectors. Methods Key stakeholders, identified from various points in the pharmaceutical supply chain, were invited to attend a series of virtual discussion sessions to address specific medicines access challenges to the provision of cancer care in South Africa. For each session, a case scenario, based on a real world situation/event was presented for discussion, and viable solutions and areas requiring further research or legislative changes were identified. Topics covered in these discussions included registration pathways and obstacles; limitations of current medicine pricing policies; alternate reimbursement models; funders’ initiatives to ensure access to oncology medicines; and essential medicine selection and procurement in the public sector. Findings The key issues raised in the discussions included: non-transparency in the approval and pricing of unregistered medicines accessed in terms of section 21 of the Medicines and Related Substances Act of 1965 (as amended); commercial decisions related to the small market for oncology medicines in South Africa; inequities between public and private sector access; alternate forms of price negotiation in the private sector; the restrictions imposed by the single exit price model; and the role of co-payments for those medicines not included as prescribed minimum benefits. Conclusions There is a clear need for a forum where all stakeholders and actors in this field can engage in discussions to find solutions to the oncology medicines access conundrum, including the development of legislative amendments.

Access to healthcare services and factors associated with unmet needs among migrants in Phuket Province, Thailand, 2023: a cross-sectional mixed-method study

BackgroundPhuket Province is a major tourist destination with a migrant workforce accounting for 10% of its population. Despite governmental efforts to adjust health insurance policies, migrants face healthcare access challenges. This study examines the current healthcare access situation and factors associated with unmet needs among migrants in Phuket Province.MethodsWe used a cross-sectional mixed-methods approach, recruiting participants through snowball sampling from the Migrant Health Volunteer Network. Quantitative data were gathered using self-administered questionnaires, with unmet need defined as desired outpatient or recommended inpatient services not received at government hospitals. Multivariable logistic regression identified unmet need predictors, and we assessed the mediating effect of health insurance status. Qualitative data from three focus groups on healthcare access provided context and enriched the quantitative findings.ResultsThis study includes 296 migrants mainly from Myanmar. The overall unmet need prevalence was 14.86%, mainly attributed to having undocumented status (34.09%), affordability issues (20.45%), and language barriers (18.18%). Working in the fishery industry significantly increased unmet needs risk (aOR 2.68, 95% CI 1.08–6.62). Undocumented status contributed a marginal total effect of 4.86 (95% CI 1.62–14.54), with a natural indirect effect through uninsured status of only 1.16 (95% CI 0.88–1.52). Focus group participants used various medical resources, with insured individuals preferring hospital care, but faced obstacles due to undocumented status and language barriers.ConclusionValid legal documents, including work permits and visas, are crucial for healthcare access. Attention to fishery industry practices is needed. We recommend stakeholder discussions to streamline the process of obtaining and maintaining these documents for migrant workers. These improvements could enhance health insurance acquisition and ultimately improve healthcare affordability for this population. These insights could be applied to migrant workers in other urban and suburban area of Thailand regarding access to government healthcare facilities.

Inquiry into Teachers' and Parents' Experiences of Radio-Based Instruction and Modular Distance Learning in Early Childhood Education

This study examines the perspectives and experiences of educators and caregivers regarding radio-based instruction (RBI) and modular distance learning (MDL) in early childhood education. Semi-structured interviews with 10 parents and 6 kindergarten teachers in the Bay Sub-Office, Laguna, Philippines revealed significant challenges in access to technology, parental involvement, and socio-emotional development of learners. The findings underscore the need for clear instructional guidance and accessible resources. The study concludes that guardians’ participation, engagement, instructional clarity, and material accessibility are crucial for effective remote learning. As a result, the RADIO model and a comprehensive course outline were developed to address these needs, emphasizing resilience, collaboration, and inclusivity. Recommendations include enhancing technological infrastructure to ensure equitable access, implementing customized parental education programs, integrating socio-emotional learning (SEL) into the curriculum, providing targeted professional development for educators, and establishing continuous research and evaluation mechanisms to adapt strategies effectively. These recommendations foster an inclusive and dynamic educational ecosystem, enhance early childhood education and ensure quality remote learning experiences.

There Is More to Life Than Walking: A Qualitative Study of Survivorship Among Peer Mentors in the Spinal Cord Injury Community.

Objective: To identify factors impacting survivorship among people living with spinal cord injury (SCI) and volunteering in a peer mentorship program. Research Method/Design: Semi-structured interviews were conducted by a leader of a non-profit organization designed to promote independent living after SCI. Questions explored intrinsic factors such as resilience and emotional coping as well extrinsic factors such as family support and accessibility challenges that impacted their SCI survivorship journey. Two independent anonymous reviewers conducted thematic analysis to identify these factors. Results: Twenty-eight members of the SCI peer mentorship program participated. Four themes affecting survivorship were identified: Sense of Achievement, Post-Injury Growth, Post-Injury Challenges, and Giving and Receiving Support. Nearly all participants focused their responses on Post-Injury Growth and Giving and Receiving Support as reasons for their interest in serving as peer mentors. Conclusions: This study highlights a need for peer community integration following SCI and underscores the importance of using a community-driven participatory model to inform and guide research. Peer mentorship programs can link SCI survivors to mentors and facilitate other sources of social fulfillment and thus can have a profound impact on individuals' survivorship post-SCI. This study identified a Sense of Achievement, Post-Injury Growth, Giving and Receiving Support, and Post-Injury Challenges as factors that most impact the SCI survivorship journey. This community leader's work underscores the importance of cognitive framing and social networks in post-injury rehabilitation in this population. Future directions include analyzing the longitudinal effects of peer mentorship participation on life satisfaction and community building in individuals living with SCI.

Retro-umbilical adhesiolysis: a novel approach for a misnomered lesion

Omental adhesions to the anterior abdominal wall are a common complication of abdominal surgery. Specific adhesions to the back of the umbilicus represent a challenge for safe laparoscopic access. In this case report, we describe a simplified two-port laparoscopic access procedure for retro-umbilical adhesiolysis. We concluded that successful adhesiolysis of retro-umbilical adhesions using the sequential Darwish and Lee-Haung points is feasible, and this procedure is a safe, minimally invasive alternative to the primary laparoscopic approach.

Primary care telehealth utilization by access-challenged populations in Medicare Advantage.

Although telehealth utilization in primary care has decreased markedly since 2020, it remains higher than before the COVID-19 pandemic. There is debate about its role in a post-pandemic healthcare system, particularly for certain groups of patients that may experience greater access challenges related to in-person care. To inform this debate, we examined the use of audiovisual telehealth for primary care as a share of total primary care outpatient visits among Medicare Advantage beneficiaries with and without 3 characteristics associated with potential access challenges (low-income status, disability, and frailty). Primary care visits when the beneficiary was frail were 39.4% (OR: 1.39 [95% CI, 1.37-1.42]) more likely to be telehealth; when the beneficiary was disabled or low-income status, visits were 20.1% (OR: 1.20 [95% CI, 1.18-1.22]) and 8.3% (OR: 1.08 [95% CI, 1.05-1.12]) more likely to be telehealth, respectively. The differential use of telehealth among beneficiaries with low-income status or disability, compared with those without, was significantly larger among providers with a 2-sided risk contract compared with fee for service (low-income status: OR: 1.19 [95% CI, 1.04-1.35]; disability: OR: 1.07 [95% CI, 1.01-1.13]).

Exploring Social Capital And Agribusiness Systems Of Transmigrants In The Early Settlement Phase: A Case Study In Wasile District

This research was conducted in a transmigrant settlement in Wasile District, East Halmahera Regency, North Maluku Province, where the initial placement included ethnic groups from Banyuwangi and Banyumas. The study aims to analyze the support of social capital for the adaptability of transmigrants. A post-positivist paradigm was employed in this research. Data were collected through observation, participatory observation, in-depth interviews, focus group discussions, and document reviews. The informants consisted of 6 key informants and 14 supporting informants. The key informants included two representatives each from the Banyuwangi and Banyumas transmigrant groups placed in 1983, a Field Extension Officer (PPL), the Wasile District Head, the Village Head of Bumi Restu, and the Village Head of Mekar Sari. The supporting informants were those recommended by the key informants. The informants were selected purposively, followed by a snowball sampling technique. The data were analyzed qualitatively and descriptively manner. The findings indicate that the social capital support possessed by these two transmigrant groups significantly enhanced their adaptability, enabling them to survive and thrive. Furthermore, the implications of these findings are substantial. Strong social capital among the transmigrants can facilitate knowledge exchange, resource sharing, and collective action, essential for establishing and maintaining effective agribusiness practices. This robust support network enables transmigrants to overcome agricultural production, market access, and economic integration challenges. Consequently, the enhanced adaptability fostered by social capital improves their resilience and contributes to the overall success and sustainability of their agribusiness ventures, promoting community development and economic growth in the region.

A Systematic Review and Narrative Synthesis of Factors Affecting Pre-exposure Prophylaxis Willingness Among Black Women for HIV Prevention.

Pre-exposure prophylaxis (PrEP) can significantly reduce human immunodeficiency virus (HIV) transmission among Black women in the United States (U.S.), a group disproportionately affected by HIV. However, PrEP uptake in this HIV-vulnerable population is low. This review analyzes the factors influencing Black women's PrEP willingness using the Behavioral Model for Vulnerable Populations (BMVP). Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and the Population, Intervention, Comparison, Outcome, Study Design (PICOS) framework, we conducted a systematic literature search and selected 24 peer-reviewed studies on PrEP willingness. Narrative synthesis revealed a heterogeneous landscape of the determinants affecting PrEP willingness among Black women, categorized into three main domains. Predisposing demographic and social factors included younger age, unmarried status, higher education, sexual or gender minority identity, trust in healthcare providers, and perceived HIV risk. Predisposing behavioral factors included condomless sex, multiple partners, and engagement in sex work. Socioeconomic status, health insurance, healthcare access, support systems, and structural challenges were identified as enabling factors influencing Black women's PrEP willingness. Finally, the perceived need domain and health-related factors influencing the perceived need for PrEP included a history of sexually transmitted infections (STI), intimate partner violence (IPV), and birth control interference. This study emphasizes the complexity of the barriers and facilitators of PrEP uptake and, thus, the need for tailored interventions and health strategies to promote its use. Addressing the interconnected individual, interpersonal, and structural determinants of PrEP access is crucial for improving PrEP willingness and thereby advancing health equity in this population.

Modeling the importance of physician training in practice location for Ohio otolaryngologists.

Underserved communities in southeastern Ohio and Appalachia face significant healthcare accessibility challenges, with the Midwest offering a lower density of healthcare providers compared to coastal regions. Specifically, underserved communities in southeastern Ohio and Appalachia are disadvantaged in otolaryngology care. This analysis aims to identify factors that lead otolaryngologists to a respective practice location, and if any of that influence comes from where otolaryngologists completed their medical education. The proportion of otolaryngologists who performed medical school, residency, and/or fellowship in Ohio was analyzed utilizing a three-sample test for equality. Multivariate logistic regression and Pearson prediction models were produced to analyze the impact of performing medical training (medical school, residency, and fellowship) in Ohio. Going to medical school in Ohio significantly increases the odds of going to an otolaryngology residency in the state (p<0.001). Moreover, between medical school and residency, medical school was a significantly better predictor of otolaryngologists practicing in Appalachia (Δ Bayesian Information Criterion [BIC]>2) and southeast Ohio (ΔBIC>10). Medical school in state was also a better predictor of percent rural and median household income than residency (ΔBIC>10). The multivariate model of medical school and residency was significantly better than either predictor alone for the population (ΔBIC>2). All models predicting percent rural were significantly improved with the addition of a Doctor of Osteopathy (DO) degree (ΔBIC>10). Where physicians complete their medical training (medical school, residency, and fellowship) in state has a significant impact on predicting their future place of practice. This study found that the location of such training has a positive predictive nature as to whether that physician will practice in a rural and underserved area in the future. Notably, the addition of being licensed as a DO also increased the probability of that physician practicing in a rural area.

Current Accessibility Challenges to Dental Care

Introduction. Access to dental care is a key aspect of ensuring public health and well-being. Modern health-care systems face many challenges related to the provision of high-quality dental services to all patients seeking for medical help. There is a wide range of challenges, from financial and organizational issues to social and cultural aspects. Lack of dental care affects not only oral health but health in general. Limited access to dental care can lead to tooth decay or other conditions that require expensive treatment in hospital settings, thus disrupting more urgent medical needs.The purpose of this work was to consider the current problems related to the accessibility of dental care. To this purpose, an analysis of Russian and foreign scientific literature was carried out.Materials and methods. This study used general scientific research methods (generalization, analysis, and synthesis). Papers by Russian and foreign authors as well as analytical reports on public and private pro-grams that contribute to increasing the availability of dental medical care were studied.Results. In the context of universal health care, access to dental care is considered a vital public health issue. Financial, geographical, cultural, and social barriers to dental care are considered the most significant. In the Russian Federation, according to the Federal State Statistics Service (Rosstat), about 30% of the popu-lation does not have regular access to dental services due to financial and geographical barriers.

Trans Health is Public Health: The Prevalence of HIV Among Trans and Gender Expansive People in Kazakhstan.

Trans and gender expansive (TGE) individuals around the world are at increased risk for contracting HIV and sexually transmitted infections (STIs), yet the combination of stigma, accessibility challenges, and a lack of trans-specific, trans-affirming interventions perpetuates rates of infection. Due to the severe paucity of data on TGE communities and HIV in Central Asia, this study describes HIV infections (both known and newly detected) and STIs among TGE in a multicity Kazakhstan study. This study utilized behavioral and biological assay data collected in a NIDA-funded clinical trial of a behavioral HIV preventive intervention for substance using cis and trans gay and bisexual men who have sex with men (GBMSM) across three Kazakhstan cities (Almaty, Astana, and Shymkent). We specifically focus on HIV infection, as well as three other STIs (chlamydia, gonorrhea, and syphilis), among 68 TGE individuals who participated in the trial from August 2018 to March 2022. Findings reveal that while the majority (69%) of TGE participants have undergone HIV testing in their lifetime-with 32% having completed an HIV test in the prior 6 months-over a third (37%) of participants did not know their current HIV status. Fourteen (21%) of the participants were confirmed to be living with HIV, and 11 (79%) of these confirmed infections were reportedly unknown prior to testing. STI testing revealed that 47% of the TGE sample tested positive for chlamydia, gonorrhea, or syphilis, with almost 10% testing positive for more than one of these STIs. Findings from this study demonstrate high rates of HIV and STIs among TGE individuals in this sample population in Kazakhstan, as well as a discrepancy between HIV status awareness and confirmed HIV diagnosis (with higher rates of confirmed HIV diagnosis). Additionally, the HIV testing rates fall short of the 90-90-90 and 95-95-95 UNAIDS targets for 2020 and 2030, respectively. These results underscore the need for additional research, interventions, and services to address HIV and other STIs and increase testing-concomitantly redressing the conditions leading to marginalization-among TGE in Kazakhstan. NCT02786615.

Accelerating economic development in Latin America through overcoming access challenges to supercomputing infrastructure.

Accelerating economic development in Latin America through overcoming access challenges to supercomputing infrastructure.

From lab to field with machine learning – Bridging the gap for movement analysis in real-world environments: A commentary

Biomechanical data collection was largely confined to controlled laboratory setups, relying on marker-based systems or force platforms. However, the emergence of wearable sensors and markerless motion capture has revolutionized this field, enabling data collection in real-world scenarios. This shift has also sparked interest in integrating machine learning (ML) into biomechanical workflows, promising to revolutionize data acquisition in field settings and refine data analysis (Halilaj et al., 2018). Figure 1 provides an overview of corresponding ML applications for key tasks in the biomechanical workflow. This commentary explores the transformative potential of ML in biomechanics, focusing on enhancing data collection and analysis in real-world environments. Pose estimation (a) is the process of automatically tracking and determining the body’s anatomical landmarks, body segments, or joint centre locations in video images using ML, enabling the quantification of human movement without marker and sensor attachments to the human body. Feature estimation (b) employs ML to predict complex biomechanical data, e.g. joint moments from more accessible data sources, including IMUs, pressure insoles, and RGB video cameras. Event detection (c) in time series data is the annotation of certain events that are used to extract useful and vital information or to remove unwanted and unnecessary data for further analysis. Clustering (d) involves grouping instances or individuals with similar biomechanical characteristics using unsupervised ML, thereby revealing underlying structures and subgroups within complex biomechanical data. Finally, automated classification (e) refers to the process of developing a predictive model that assigns input features of data samples to predefined categories or classes using supervised ML. Despite the advancements of ML in biomechanics, central challenges are faced. Estimation errors remain critically high depending on the task and application field, necessitating a careful reflection on data acquisition potentials. Furthermore, especially complex Deep Learning models, while showing promising performances, exhibit a lack of transparency in understanding their decision-making processes and the underlying patterns and rules learned from the data. This phenomenon, often termed as the black-box nature of these models, poses a considerable obstacle. In response, Explainable Artificial Intelligence (XAI), a field that encompasses different explainability approaches to shed light on the inner workings of complex, non-linear ML models, has gained increasing attention in recent years (Slijepcevic et al., 2023). A further central challenge is the availability of data and annotations, which describes the limited availability or insufficiency of relevant and comprehensive datasets, as well as task-specific annotations, for conducting thorough analyses and research in biomechanics. The lack of large-scale benchmark datasets available restricts the widespread adoption of ML-based approaches in biomechanics. Privacy concerns present significant ethical and legal issues, e.g. with identifiable video data. Additionally, model validation remains a critical problem, as many studies fail to validate their models on diverse datasets, often relying on limited data from a single laboratory. Furthermore, there is a risk that the fundamental mechanical understanding of biomechanical processes might be overshadowed by an over-reliance on ML techniques. In conclusion, the integration of ML into biomechanics presents a transformative opportunity for understanding human movement by enabling and improving data collection and analysis in real-world settings. Challenges in data accessibility and methodological transparency necessitate collaborative efforts for future advancements.

Examining the Cultural Appropriateness and Acceptability of a Traditional Birth Attendants' Training Program in Rural Guatemala.

While there has been notable global advancement in reducing maternal mortality rates (MMRs) in Latin America, the rates among indigenous women remain alarmingly high. This disparity persists in Guatemala, where indigenous women face a two-fold higher MMR compared to their non-indigenous counterparts. Most of the obstetrical care is performed by traditional Mayan birth attendants (TBAs), also known as comadronas, who have minimal formalized clinical training in obstetrical care. Considering there was no national comprehensive training program for TBAs, a unique training program was established in 2014. This program, the School of PowHER (Providing Outreach in Women's Health and Educational Resources), aims to ensure sustainable education led by TBAs for TBAs in rural Guatemala with the ultimate goal of helping TBAs provide basic antenatal care and learn how to identify and refer high-risk pregnancies.The aim of this proposed study is to examine the cultural appropriateness and sensitivity of the training program through a mixed-methods approach. We utilized a mixed-methods strategy, combining quantitative and qualitative methodologies. The quantitative aspect involved a 14-item written survey using a three-point Likert scale for responses, while the qualitative part utilized a semi-structured interview guide to conduct a focus group discussion. The survey (n=33) showed that 32 comadronasfound the curriculum applicable (97%) and comprehensible (97%). However,only 26 comadronas (79%) were comfortable with anatomy terminology. Opinions on teaching tools varied: 13 comadronas (39%) felt they were always representative, 13 comadronas (39%)sometimes, and seven comadronas (21%) never. Group discussions echoed this lack of representation. In the learning environment, 32 comadronas felt welcomed (97%) and 31 felt understood (94%), but five comadronas (15%) were not comfortable asking questions. Thirty-one comadronas (94%) believed training made pregnant women trust comadronas more. Group interviews highlighted increased confidence, better care, and perceived lower maternal mortality. This study found the program to be culturally sensitive and effective. Group interviews highlighted increased confidence, improved patient care, and perceived reductions in maternal mortality. Feedback emphasized the need for more culturally relevant materials, resources, and collaboration with the Ministry of Health. This program's community-centered approach could serve as a model for similar initiatives in low- and middle-income countries addressing high maternal mortality rates, despite language and access challenges.

Disparities in Spatial Access to Sleep Health Care in the United States: A Population-Based Geospatial Analysis

ObjectivesTo examine spatial access to sleep health care in the United States and investigate associations with demographic and socioeconomic characteristics, thereby identifying high-risk communities with limited spatial access to sleep health service. DesignA cross-sectional population-based geospatial analysis. Settings and ParticipantsResidents in US Census tracts across the 48 contiguous states, Alaska, and Hawaii. MethodsThe 2020 American Community Survey 5-year estimates, 2010 rural-urban commuting area codes, 2020 Area Deprivation Index, and sleep care provider locations from the National Provider Identifier file were used to assess the spatial access and related demographic/socioeconomic characteristics. Spatial access was measured by spatial access ratio using enhanced 2-step floating catchment area methods. The associations were investigated using logistic regression analysis and multivariate linear regression analysis. ResultsA total of 45.8 million residents experienced low spatial access to sleep health care. Spatial access decreased in rural and high Area Deprivation Index areas, and in areas characterized by higher population with uninsured status, vehicle unavailability, internet unavailability, cognitive difficulties, and hearing difficulties. With a 10% increase in the percentage of the racial minority (non-white) population, metropolitan census tracts experienced an increase in spatial access (3.268%), whereas micropolitan (−1.526%) and rural (−4.493%) areas experienced a decrease in spatial access. Similar findings were observed within the ethnic minority (Hispanic or Latino) population. Conclusions and ImplicationsDisparities exist in spatial access to sleep health care across the United States, especially for disadvantaged individuals. Racial/ethnic minorities exhibit contrasting spatial access patterns in urban and rural areas, with those in rural areas facing more challenges in spatial access to sleep health care.

Abstract B128: Underlying factors influencing kidney cancer surgical treatment disparities: Patients, non-patient community members and urologists’ perspectives

Abstract Background: Racial and ethnic minority patients often delay or forgo kidney cancer (KCa) surgical treatment and have an invasive surgical treatment. This study aimed to understand the underlying factors of KCa surgical treatment disparities through interviews with KCa patients and non-patients from racial and ethnic minority communities in Arizona and online surveys with urologists who practice in the U.S. Methods: We conducted phone interviews with KCa patients (n=13) and interviews at health events with community members without KCa (n=61). Online surveys were conducted with urologists (n=54). Results: Many interview participants had healthcare access issues with 22% reporting not having a primary care doctor and 12% reporting that there was a time when they could not see a doctor because of cost. Almost 50% reported that they had delayed care because they could not get an appointment soon enough. Among 10 patients who responded to a question about diagnosis delay, 4 answered that they waited over a year to see their doctor when they had health issues before their diagnosis. A quarter of community participants (25%) and about a third of patients (31%) reported that cultural values or religious beliefs influenced their choice of treatment. When community participants were asked what they knew about KCa symptoms and treatments, many did not provide relevant or correct information. Only 51% of non-patients reported that they trusted their doctor’s judgements about their medical care, but 92% of patients reported that they trusted their doctor’s judgement. About 30% of urologists reported that patients from racial and ethnic minority backgrounds often have healthcare access challenges, but only 9% responded that NHW patients often have challenges. They did not report that racial and ethnic differences in treatment exist. About 10% of urologists reported socioeconomic backgrounds of patients affect treatment decision and timeliness often or all the time. Only 46% reported that they refer patients to necessary services all the time, when patients express concerns of finance and healthcare access challenges. Many urologists strongly or slightly agreed that treatment decisions should be made by the treating clinicians (82%) and based on clinical information (87%). Many also strongly or slightly agreed that patients and their family members should contribute to decision-making (98%), while 46% strongly or slightly agreed that patients’ cultural and religious backgrounds often affect their treatment choices. In open-ended questions, urologists responded that work and family obligations, healthcare access, and health literacy rather than race and ethnicity are factors influencing treatment, while mistrust was identified as one of factors influencing treatment delay. Conclusions: Barriers to healthcare access, lack of knowledge, and mistrust before diagnosis may be underlying factors among patients, while urologists view healthcare access, social and economic factors, and mistrust influence KCa surgical treatment decision and delay. Citation Format: Ken Batai, Alex Cruz, Juan Adrover, Daphne Larose, D'Andre Gomez, Francine C. Gachupin, Jacquanette R. Slowtalker, Benjamin R. Lee, Juan Chipollini. Underlying factors influencing kidney cancer surgical treatment disparities: Patients, non-patient community members and urologists’ perspectives [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B128.

Toward building a comprehensive human pan-genome: The SEN-GENOME project

The human reference genome (GRCh38), primarily sourced from individuals of European descent, falls short in capturing the vast genetic diversity across global populations. Efforts to diversify the reference genome face challenges in accessibility and representation, exacerbating the scarcity of African genomic data crucial for studying diseases prevalent in these populations. Sherman etal. proposed constructing reference genomes tailored to distinct human sub-populations. Their African Pan-Genome initiative highlighted substantial genetic variation missing from the GRCh38 human reference genome, emphasizing the necessity for population-specific genomes. In response, local initiatives like the Senegalese Genome project (SEN-GENOME) have emerged to document the genomes of historically overlooked populations. SEN-GENOME embodies community-driven decentralized research. With meticulous recruitment criteria and ethical practices, it aims to sequence 1,000 genomes from 31 ethnolinguistic groups, in the fourteen administrative regions of Senegal, fostering local genomic research tailored to the region. The key to SEN-GENOME's success is its commitment to local governance of data, capacity building, and integration with broader pan-genome projects in Africa. Despite the complexities of data harmonization and sharing, our collaborative efforts are aligned with common goals, ensuring steady progress toward a comprehensive human pan-genome. We invite and welcome collaboration with other research entities to achieve this shared vision. In summary, local initiatives such as SEN-GENOME are pivotal in bridging genomic disparities, offering pathways to equitable and inclusive genomic research. Collaborative endeavors guided by a collective vision for human health will propel us toward a more encompassing understanding of the human genome and better health through genomic medicine.

Implementing an early-life nutrition intervention through primary healthcare: staff perspectives

BackgroundNutrition interventions targeting early childhood can be cost-effective and may provide lifelong, intergenerational benefits. From October 2022 to April 2023 the Nutrition Now (NN) e-learning resource was implemented within Early Childhood Education and Care centres and the Maternal and Child Healthcare Centre (MCHC) in a southern Norwegian municipality. As part of the NN project, the present study aims to explore the MCHC staff’s experiences with implementing the NN resource, to gain insights into measures important to scale up digital early-life nutrition interventions.MethodsThree group interviews were conducted among public health nurses and midwives alongside one individual interview with the department leader of a MCHC in May 2023. An inductive thematic analysis, as described by Braun and Clarke, was conducted to generate the key themes and subthemes regarding the implementation process of NN within the MCHC.ResultsThree main themes were generated: [1] Important resource but not always utilized; [2] Parents are interested but had issues with access; and [3] Staff and stakeholder buy-in and commitment needed from the start. Overall, the staff viewed the NN resource as a potential tool for promoting diet-related topics and believed it could support the guidance they were already providing parents. However, few staff members fully familiarized themselves with the resource. While staff perceived parents as positive when informed about NN, they believed issues such as access challenges, competing platforms, and time constraints reduced parental engagement. Lastly, staff suggested improvements for NN’s implementation, including enhanced training, better planning, assigning champions, and lowering the threshold for access.ConclusionThe findings of this study suggest that the real-world implementation of digital evidence-based health behaviour interventions is feasible but would be enhanced by employing strategies focusing on engagement and utilization.Trial registrationThe main study is registered in the ISRCTN registry with ID ISRCTN10694967, https://doi.org/10.1186/ISRCTN10694967. (Registration date: 19-06-2022).

Conformational Selection in Enzyme-Catalyzed Depolymerization of Bio-based Polyesters.

Enzymatic degradation of polymers holds promise for advancing towards a bio-based economy. However, bulky polymers presents challenges in accessibility for biocatalysts, hindering depolymerization reactions. Beyond the impact of crystallinity, polymer chains can reside in different conformations affecting binding efficiency to the enzyme. We previously showed that the gauche and trans chain conformers associated with crystalline and amorphous regions of the synthetic polyethylene terephthalate (PET) display different affinity to PETase, thus affecting the depolymerization rate. However, structural-function relationships for biopolymers remain poorly understood in biocatalysis. In this study, we explored biodegradation of by-us previously synthesized bio-polyesters made from a rigid bicyclic chiral terpene-based diol and copolymerized with various renewable diesters. Herein, four of those polyesters spanning from semi-aromatic to aliphatic were subjected to enzymatic degradations in concert with induced-fit docking (IFD) analyses. Our findings demonstrate the importance of conformational selection in enzymatic depolymerization of biopolymers. A straight or twisted conformation of the polymer chain is crucial in biocatalytic degradation by showing different affinities to enzyme ground-state conformers. This work highlights the importance of considering the conformational match between the polymer and the enzyme to optimize the biocatalytic degradation efficiency of biopolymers, providing valuable insights for the development of sustainable bioprocesses.

Overcoming Access Challenges to Treat Arrhythmias in Patients with Congenital Heart Disease Using Robotic Magnetic-Guided Catheter Ablation.

The prevalence of congenital heart disease (CHD) has surged in recent decades, owing to a substantial reduction in mortality. As individuals with CHD age, they become increasingly susceptible to late complications including arrhythmias. These arrhythmias often arise decades after surgical intervention and significantly impact quality of life, hospitalizations, and mortality. Catheter ablation has gained widespread acceptance as a critical intervention for managing arrhythmias in patients with CHD. However, anatomical and physiological features unique to this population pose challenges to standard manual ablation procedures, potentially impacting safety and efficacy. Robotic magnetic-guided navigation (RMN) has emerged as a technological solution to address these challenges. By utilizing soft and flexible catheters equipped with magnets at their tips, RMN enables robotic steering and orientation of catheters in three-dimensional space. This technology overcomes obstacles such as distorted vascular pathways and complex post-surgical reconstructions to facilitate access to target chambers and improve maneuverability within the heart. In this review, we present an overview of the safety and efficacy evidence for RMN-guided catheter ablation in CHD patients and highlight potential advantages. Additionally, we provide a detailed case presentation illustrating the practical application of RMN technology in this population. Although the literature on RMN-guided ablation in patients with CHD remains limited, it has shown promise in achieving successful outcomes, particularly in cases where manual ablation failed or was deemed non-feasible. Further validation through large-scale prospective studies is necessary to fully ascertain the benefits of RMN technology in this patient population.