Bridging Language Barriers in COVID-19 Research: Descriptive Study of AccesoCovid.com's Reach and User Engagement.

BACKGROUND: The COVID-19 pandemic underscored the challenge of swiftly disseminating research findings to a global audience. Language barriers further exacerbated disparities in access to timely scientific information, particularly for non-English speaking communities. The majority of COVID-19 research was published in English, limiting accessibility for Spanish-speaking populations. OBJECTIVE: This paper aims to assess the reach and effectiveness of AccesoCovid.com, a platform designed to disseminate up-to-date COVID-19 research in both English and Spanish, addressing the language gap in scientific communication. METHODS: AccesoCovid.com was developed through a partnership between the University of California, San Francisco (UCSF) and Universidad Nacional Autónoma de México (UNAM). The website's performance and user engagement were evaluated using Google Analytics over a span of 2 years. Key metrics included user language preference, geographical distribution, and site traffic. The website summarized and translated 1032 articles on various COVID-19 topics, such as "Pharmaceutical Interventions and Vaccines." RESULTS: From February 2021 to February 2023, the platform attracted 57,000 users. Of the 43,000 unique new visitors, 84.2% (n=36,219) hailed from Spanish-speaking regions. The majority accessed the site organically through search engines, with 88.4% (n=38,000) of users arriving this way, while 5000 (11.6%) users accessed the site directly. Most users (n=30,894, 72.1%) preferred the Spanish version of the site. The website's most accessed category was "Pharmaceutical Interventions and Vaccines," followed by "Clinical Presentation and Management" and "Mental Health." Regarding language distribution, 72.1% (n=30,894) of users primarily used Spanish; 21.4% (n=9215) used English; and 6.7% (n=2891) spoke other languages, including Portuguese, Chinese, and German. Geographically, the website attracted visitors from 179 countries, with the highest visitor counts from Mexico (n=12,342, 28.7%), Spain (n=6405, 14.9%), the United States (n=4416, 10.3%), and Peru (n=3821, 8.9%). CONCLUSIONS: AccesoCovid.com successfully bridged a critical language gap in the dissemination of COVID-19 research. Its success underscores the pressing need for multilingual scientific resources. The platform demonstrated significant user engagement and reach, particularly in Spanish-speaking countries. This highlights the potential for similar platforms to ensure equitable access to scientific knowledge across diverse linguistic communities. Future efforts should focus on expanding to other languages and conducting formal evaluations to enhance user satisfaction and impact.

Enabling equitable and affordable access to novel therapeutics for pandemic preparedness and response via creative intellectual property agreements.

The COVID-19 pandemic demonstrated that the current purely market-driven approaches to drug discovery and development alone are insufficient to drive equitable access to new therapies either in preparation for, or in response to, pandemics. A new global framework driven by equity is under negotiation at the World Health Organization to support pandemic preparedness and response. Some believe that the global intellectual property (IP) system itself is part of the problem and propose a purely Open Science approach. In this article, we discuss how existing IP frameworks and contractual agreements may be used to create rights and obligations to generate a more effective global response in future, drawing on experience gained in the COVID Moonshot program, a purely Open Science collaboration, and the ASAP AViDD drug discovery consortium, which uses a hybrid, phased model of Open Science, patent filing and contractual agreements. We conclude that 'straight to generic' drug discovery is appropriate in some domains, and that targeted patent protection, coupled with open licensing, can offer a route to generating affordable and equitable access for therapy areas where market forces have failed. The Extended Data contains a copy of our model IP policy, which can be used as a template by other discovery efforts seeking to ensure their drug candidates can be developed for globally equitable and affordable access.

Drug discovery and development organizations usually recoup their investment in this risky and expensive process by filing patents on drug candidates which, if granted, give them a time-limited monopoly on the manufacture, sale or licensing of the drug. This means they can negotiate its price and terms of distribution, which creates distortions in access globally. In an alternative 'Open Science' approach, R&D organizations publish all the information about a prospective drug without applying for patents, meaning that anyone can use this knowledge to make and sell the drug, while the R&D organizations have no control over how it is priced or distributed. In a pandemic, fast-spreading viruses must be rapidly contained by delivering drugs to where they are most needed. This requires innovation and global access, but this is stifled in both models ­ in the first because of patent abuses, in the second because the lack of control may jeopardize the most efficient development. The authors share a model that prioritizes globally fair and affordable pricing by creating 'maximally permissive licenses' based on 'minimally defensive patents'. They explain the practical and bioethical background to their proposals and share an example of collective management of intellectual property and licensing agreement that is being used in the AI-driven Structure-enabled Antiviral Platform (ASAP) Center's Pandemic Preparedness work.

Equitable Access to Genomic Molecular Testing for Australian Cancer Patients: Insights from the Victorian Precision Oncology Summit.

The Victorian Precision Oncology Summit, convened in 2023, was a joint initiative between the Victorian Comprehensive Cancer Centre Alliance (VCCC Alliance) and the Monash Partners Comprehensive Cancer Consortium (MPCCC) and was proposed to guide a coordinated state-wide conversation about how the oncology sector can overcome some of the current obstacles in achieving equity of access to clinical cancer genomics for Victorian patients. Themes that emerged from discussion groups at the Summit include standardisation, centralisation, funding, education and communication and insights across those themes are outlined in this manuscript. The event served as a large consultation piece for the development of a broader precision oncology roadmap, which explores equitable access to molecular testing for Victorian patients, currently in development by the VCCC Alliance and MPCCC in collaboration with other key Victorian and national stakeholders. While this symposium was a Victorian initiative, it is felt that the insights garnered from this consultation piece will be of interest to consumer groups, clinicians, researchers, educators, policy makers and other key stakeholders in other states of Australia as well as in other countries implementing comprehensive genomic profiling within complex health systems.

Advancing the future of equitable access to health care: recommendations from international health care leaders.

Disparities in access to health care are persistent and contribute to poor health outcomes for many populations around the world. Barriers to access are often similar across countries, despite differences in how health systems are structured. Health care leaders can work to address these barriers through bold, evidence-based actions. The Future of Health (FOH), an international community of senior health leaders, collaborated with the Duke-Margolis Institute for Health Policy to identify priority organizational and policy actions needed to improve equitable access to health care through a consensus-building exercise, a targeted literature review, and an expert discussion group. This paper describes four key action areas for health care leaders that FOH members identified as critical to enabling the future of equitable access to health care: ensuring prioritization of and accountability for equitable access to care; establishing comprehensive, organization-wide strategies to address barriers to access; clearly defining and incentivizing improvement on key measures related to reducing disparities in access; and establishing cross-sector partnerships to improve equitable access.

An integrated approach to analyze equitable access to food stores under disasters from human mobility patterns.

Limited access to food stores is often linked to higher health risks and lower community resilience. Socially vulnerable populations experience persistent disparities in equitable food store access. However, little research has been done to examine how people's access to food stores is affected by natural disasters. Previous studies mainly focus on examining potential access using the travel distance to the nearest food store, which often falls short of capturing the actual access of people. Therefore, to fill this gap, this paper incorporates human mobility patterns into the measure of actual access, leveraging large-scale mobile phone data. Specifically, we propose a novel enhanced two-step floating catchment area method with travel preferences (E2SFCA-TP) to measure accessibility, which extends the traditional E2SFCA model by integrating actual human mobility behaviors. We then analyze people's actual access to grocery and convenience stores across both space and time under the devastating winter storm Uri in Harris County, Texas. Our results highlight the value of using human mobility patterns to better reflect people's actual access behaviors. The proposed E2SFCA-TP measure is more capable of capturing mobility variations in people's access, compared with the traditional E2SFCA measure. This paper provides insights into food store access across space and time, which could aid decision making in resource allocation to enhance accessibility and mitigate the risk of food insecurity in underserved areas.

Factors influencing hospital charges for tonsillectomy to treat obstructive sleep apnea in children.

PURPOSE: This study investigates the impact of patient characteristics and demographics on hospital charges for tonsillectomy as a treatment for pediatric obstructive sleep apnea (OSA). The aim is to identify potential disparities in hospital charges and contribute to efforts for equitable access to care. METHODS: Data from the 2016 Healthcare Cost and Utilization Project (HCUP) Kid Inpatient Database (KID) was analyzed. The sample included 3,304 pediatric patients undergoing tonsillectomy ± adenoidectomy for OSA. Variables such as age, race, length of stay, hospital region, residential location, payer information, and median household income were collected. The primary outcome variable was hospital charge. Statistical analyses, including t-tests, ANOVA, and multiple linear regression, were conducted. RESULTS: Among 3,304 pediatric patients undergoing tonsillectomy for OSA. The average total charges for tonsillectomy were $26,400, with a mean length of stay of 1.70 days. Significant differences in charges were observed based on patient race, hospital region, and payer information. No significant differences were found based on gender, discharge quarter, residential location, or median household income. Multiple linear regression showed race, hospital region, and residential location were significant predictors of total hospital charges. CONCLUSION: This study highlights the influence of patient demographics and regional factors on hospital charges for pediatric tonsillectomy in OSA cases. These findings underscore the importance of addressing potential disparities in healthcare access and resource allocation to ensure equitable care for children with OSA. Efforts should be made to promote fair and affordable treatment for all pediatric OSA patients, regardless of their demographic backgrounds.

Is the African Vaccine Manufacturing Accelerator a decoupling mechanism?

This article explores how the African Vaccine Manufacturing Accelerator can support the sustainable production of vaccines in Africa. It highlights the value of the accelerator in relation to the Regional Vaccine Manufacturing Collaborative. The author proposes that this novel financing instrument should be well-designed and implemented in line with the targets of the Partnerships for African Vaccine Manufacturing. It should not be a decoupling tool to appease the institutional environment of the global vaccine market, but a sustainable demonstration of the goodwill and commitment of political and technical leaders to ensure equitable access to routine and epidemic-related vaccines in Africa.

Adapting an Adolescent and Young Adult Program Housed in a Quaternary Cancer Centre to a Regional Cancer Centre: Creating Equitable Access to Developmentally Tailored Support.

Adolescents and young adults (AYAs) with cancer, representing those between 15 and 39 years of age, face distinctive challenges balancing their life stage with the physical, emotional, and social impacts of a cancer diagnosis. These challenges include fertility concerns, disruptions to educational and occupational pursuits, issues related to body image and sexual health, and the need for age-appropriate psychosocial support within their communities. The Princess Margaret Cancer Centre (PM), a quaternary care center, established a specialized AYA program in 2014, offering holistic and developmentally tailored psychosocial support and currently, efforts are underway to expand this to other regions in the province to address the need for equitable access. The establishment process involves securing funding, conducting an environmental scan, identifying service gaps, developing clinical pathways, and implementing AYA supportive care. An accessible AYA program should also consider social determinants of health, social location, intersectionality, and an interdisciplinary health approach in understanding health inequities in AYA oncology care. This paper describes the processes implemented and challenges faced in creating a community-based AYA program beyond major resource-rich cities and efforts to address intersectionality.

Why does the COVAX facility fail to bridge the 'immunization gap'?

In April 2020, the World Health Organization launched a COVID-19 Vaccines Global Access (COVAX) Facility, a groundbreaking public health policy, to work "for global equitable access to COVID-19 vaccines". Although innovative, it fails to bridge the 'immunization gap' between high-income and low-income countries. The main reasons for this include: (1) failure to provide adequate incentives for self-financing countries to participate; (2) failure to design the vaccine allocation mechanism to reflect to national political considerations along with the perspective of medical ethics; (3) lack independent financing and power to enforce the policies globally. Constraints have limited the effectiveness of COVAX to date but transforming it into an information center to provide information on vaccine supply and demand, disseminate vaccine knowledge, and publish requests for help can accelerate progress.

Available but inaccessible: patient experiences during the first 2 years of a primary care-based medical cannabis program at an academic medical center.

BACKGROUND: Medical cannabis use and public acceptance in the United States have increased over the past 25 years. However, access to medical cannabis remains limited, particularly for underserved populations. To understand how patients experience medical cannabis accessibility, we measured medical cannabis use and barriers to use after medical cannabis certification in an urban safety-net academic medical center. METHODS: We conducted a retrospective cohort study among patients seen in Montefiore's Medical Cannabis Program (MMCP) from 2017 to 2019. Patient demographic and clinical characteristics, as well purchase history of medical cannabis, were extracted from electronic medical records. We also administered a phone questionnaire to a subset of patients to assess usage patterns, effectiveness, and barriers to medical cannabis use. RESULTS: Among 562 patients who were newly certified for medical cannabis between 2017 and 2019, 45% purchased medical cannabis, while 55% did not. Patients who purchased medical cannabis were more likely to be white and have private insurance or Medicare. Unregulated cannabis use and current tobacco use were less common among those who purchased medical cannabis. In multivariable logistic regression analysis, unregulated cannabis use remained negatively associated with purchasing medical cannabis. Patients reported that affordability and dispensary accessibility were their main barriers to purchasing medical cannabis. CONCLUSION: Among patients certified for medical cannabis use, fewer than half purchased medical cannabis after certification. Improving access to medical cannabis is crucial for ensuring equitable access to regulated cannabis, and to reducing unregulated cannabis use.

Financing and provision of healthcare for two billion people in low-income nations: Is the cooperative healthcare model a solution?

The international consensus in support of universal health coverage (UHC), though commendable, thus far lacks a clear mechanism to finance and deliver accessible and effective basic healthcare to the two billion rural residents and informal workers of low- and lower-middle-income countries (LLMICs). Importantly, the two preferred financing modes for UHC, general tax revenue and social health insurance, are often infeasible for LLMICs. We identify from historical examples a community-based model that we argue shows promise as a solution to this problem. This model, which we call Cooperative Healthcare (CH), is characterized by community-based risk-pooling and governance and prioritizes primary care. CH leverages communities' existing social capital, such that even those for whom the private benefit of enrolling in a CH scheme is outweighed by the cost may choose to enroll (given sufficient social capital). For CH to be scalable, it needs to demonstrate that it can organize delivery of accessible and reasonable-quality primary healthcare that people value, with management accountable to the communities themselves through structures that people trust, combined with government legitimacy. Once LLMICs with CH programs have industrialized sufficiently to make universal social health insurance feasible, CH schemes can be rolled into such universal programs. We defend cooperative healthcare's suitability for this bridging role and urge LLMIC governments to launch experiments testing it out, with careful adaptation to local conditions.

Pediatric Obesity Care via Telemedicine: Expanding the Path Forward-A Review.

PURPOSE OF REVIEW: Review latest data regarding the intersection of pediatric obesity epidemic with telemedicine expansion to meet the need of equitable obesity care in children. RECENT FINDINGS: Prevalence of pediatric obesity in the USA continues to worsen particularly in rural, underserved areas. Although there is an increasing number of obesity medicine specialists over the last decade, availability varies by geographic location. Pre-pandemic centers were limited, rarely located in rural areas, and required in-person visits for reimbursement. Telemedicine changes, responding to pandemic needs, provided increase in telemedicine utilization and acceptance with similar or improved obesity care outcomes. Given pediatric obesity prevalence and need for chronic, effective obesity care, leveraging telemedicine to expand reach and decrease access barriers provides a critical and creative remedy. Data cites similar outcomes between telemedicine and in-person care. The time to reimagine a full spectrum of care delivery for pediatric obesity is now.

Disparities in access and association between access to critical facilities during day-to-day and disrupted access as a result of storm extreme weather events.

This study examines the relationship between households' access to critical facilities day-to-day and during weather-related extreme events. Despite a robust understanding of both day-to-day access and access during disasters, the interplay between the two remains unclear. To bridge this knowledge gap, we propose a novel empirical approach, using a Texas statewide household survey (N = 810). The survey evaluates day-to-day and past events access, exploring the experiences of respondents during multiple recent disasters, rather than focusing on a specific hazard. Using correlation analysis, we examined various access-related factors such as day-to-day trip duration, alternative trip duration, and loss of access during past events. Additionally, we evaluated the association between access-related factors and sociodemographic characteristics such as income, ethnicity, and urban status. The results indicate: (1) daily trip duration to critical facilities is associated with disrupted access during storm events, and (2) disparities persist during both day-to-day times and during extreme events. These results bring new insights to the existing body of knowledge on day-to-day access and access during disasters. The findings provide scientifically grounded evidence to city managers and planners, emphasizing the need for equitable distribution of facilities to enhance access to essential facilities both in daily life and during extreme weather-related events.

Stakeholders' expectations of precision medicine: A qualitative study to identify areas of (mis)alignment.

Background and Aims: To sustainably address challenges in implementing precision medicine (PM), coordinated efforts of different stakeholders are required. Understanding their expectations represents a first key step toward aligning on future actions and strategies. Here, we aimed to explore the expectations of different stakeholders from themselves and each other regarding PM. Methods: This collaborative qualitative study was initiated by the global multistakeholder consortium From Testing to Targeted Treatments (FT3). Structured interviews were conducted with participants from five stakeholder groups: patients/patient advocates, healthcare providers (HCPs), researchers, policymakers/regulators/payers and industry representatives. A broad reach across geography, roles, experiences, and disease areas was sought. Results were analyzed by grounded theory methodology. Results: All stakeholders stated that optimal implementation of PM can only be achieved through collaboration; industry representatives were the biggest promoters of collaboration. Stakeholders agreed that PM should be implemented focusing on the patient's best interest; HCPs were seen as important gatekeepers for PM by interacting directly with patients, and policymakers/payers were perceived as the most important drivers of access to PM. Areas of misalignment included the role of industry in clinical trial design and in access to PM (perceived as important by patients, HCPs and policymakers but not by industry representatives), and the stakeholders responsible for elaborating guidelines on PM use (patients indicated policymakers, while researchers indicated themselves). Priorities for optimal PM implementation and suggested actions included the need for enhancing high-level policy focus, improving genomic literacy, optimizing the health technology assessment for PM, advocating for equitable access, promoting collaboration between industry and other stakeholder groups and development of reliable research standards. Conclusion: Stakeholder expectations revealed in this study suggested that no stakeholder group can drive change on its own; a global, multistakeholder collaborative approach that brings together current programs and best practices to support universal access to PM is needed.

Assessing Diversity in Newborn Genomic Sequencing Research Recruitment: Race/Ethnicity and Primary Spoken Language Variation in Eligibility, Enrollment, and Reasons for Declining.

PURPOSE: Diagnostic genomic research has the potential to directly benefit participants. This study sought to identify barriers to equitable enrollment of acutely ill newborns into a diagnostic genomic sequencing research study. METHODS: We reviewed the 16-month recruitment process of a diagnostic genomic research study enrolling newborns admitted to the neonatal intensive care unit at a regional pediatric hospital that primarily serves English- and Spanish-speaking families. Differences in eligibility, enrollment, and reasons for not enrolling were examined as functions of race/ethnicity and primary spoken language. FINDINGS: Of the 1248 newborns admitted to the neonatal intensive care unit, 46% (n = 580) were eligible, and 17% (n = 213) were enrolled. Of the 16 languages represented among the newborns' families, 4 (25%) had translated consent documents. Speaking a language other than English or Spanish increased a newborn's likelihood of being ineligible by 5.9 times (P < 0.001) after controlling for race/ethnicity. The main reason for ineligibility was documented as the clinical team declined having their patient recruited (41% [51 of 125]). This reason significantly affected families who spoke languages other than English or Spanish and was able to be remediated with training of the research staff. Stress (20% [18 of 90]) and the study intervention(s) (20% [18 of 90]) were the main reasons given for not enrolling. IMPLICATIONS: This analysis of eligibility, enrollment, and reasons for not enrolling in a diagnostic genomic research study found that recruitment generally did not differ as a function of a newborn's race/ethnicity. However, differences were observed depending on the parent's primary spoken language. Regular monitoring and training can improve equitable enrollment into diagnostic genomic research. There are also opportunities at the federal level to improve access to those with limited English proficiency and thus decrease disparities in representation in research participation.

How can we deliver on the promise of precision medicine in oncology and beyond? A practical roadmap for action.

Background: Precision medicine (PM) is a form of personalized medicine that recognizes that individuals with the same condition may have different underlying factors and uses molecular information to provide tailored treatments. This approach can improve treatment outcomes and transform lives through favorable risk/benefit ratios, avoidance of ineffective interventions, and possible cost savings, as evidenced in the field of lung cancer and other oncology/therapeutic settings, including cardiac disease, diabetes, and rare diseases. However, the potential benefits of PM have yet to be fully realized. Discussion: There are many barriers to the implementation of PM in clinical practice, including fragmentation of the PM landscape, siloed approaches to address shared challenges, unwarranted variation in availability and access to PM, lack of standardization, and limited understanding of patients' experience and needs throughout the PM pathway. We believe that a diverse, intersectoral multistakeholder collaboration, with three main pillars of activity: generation of data to demonstrate the benefit of PM, education to support informed decision-making, and addressing barriers across the patient pathway, is necessary to reach the shared goal of making PM an accessible and sustainable reality. Besides healthcare providers, researchers, policymakers/regulators/payers, and industry representatives, patients in particular must be equal partners and should be central to the PM approach-from early research through to clinical trials and approval of new treatments-to ensure it represents their entire experience and identifies barriers, solutions, and opportunities at the point of delivery. Conclusion: We propose a practical and iterative roadmap to advance PM and call for all stakeholders across the healthcare system to employ a collaborative, cocreated, patient-centered methodology to close gaps and fully realize the potential of PM.

Jumping Through Hoops: Community Care Clinician and Staff Experiences Providing Primary Care to Rural Veterans.

BACKGROUND: The 2019 VA Maintaining Systems and Strengthening Integrated Outside Networks Act, or MISSION Act, aimed to improve rural veteran access to care by expanding coverage for services in the community. Increased access to clinicians outside the US Department of Veterans Affairs (VA) could benefit rural veterans, who often face obstacles obtaining VA care. This solution, however, relies on clinics willing to navigate VA administrative processes. OBJECTIVE: To investigate the experiences rural, non-VA clinicians and staff have while providing care to rural veterans and inform challenges and opportunities for high-quality, equitable care access and delivery. DESIGN: Phenomenological qualitative study. PARTICIPANTS: Non-VA-affiliated primary care clinicians and staff in the Pacific Northwest. APPROACH: Semi-structured interviews with a purposive sample of eligible clinicians and staff between May and August 2020; data analyzed using thematic analysis. KEY RESULTS: We interviewed 13 clinicians and staff and identified four themes and multiple challenges related to providing care for rural veterans: (1) Confusion, variability and delays for VA administrative processes, (2) clarifying responsibility for dual-user veteran care, (3) accessing and sharing medical records outside the VA, and (4) negotiating communication pathways between systems and clinicians. Informants reported using workarounds to combat challenges, including using trial and error to gain expertise in VA system navigation, relying on veterans to act as intermediaries to coordinate their care, and depending on individual VA employees to support provider-to-provider communication and share system knowledge. Informants expressed concerns that dual-user veterans were more likely to have duplication or gaps in services. CONCLUSIONS: Findings highlight the need to reduce the bureaucratic burden of interacting with the VA. Further work is needed to tailor structures to address challenges rural community providers experience and to identify strategies to reduce care fragmentation across VA and non-VA providers and encourage long-term commitment to care for veterans.

Mapping the Landscape of Equitable Access to Advanced Neurotechnologies in Canada.

Geographic, social, political, and economic factors shape access to advanced neurotechnologies, yet little previous research has explored the barriers, enablers, and areas of opportunity for equitable and meaningful access for diverse patient communities across Canada. We applied a mixed-mode approach involving semi-structured interviews and rating scale questions to consult with 24 medical experts who are involved in the care of patients who undergo functional neurosurgery targeting the brain. Seven major themes emerged from the qualitative analysis: Health care system, Neurotechnology features, Patient demographics, Target condition features, Ethics, Upstream barriers and enablers, and Areas of opportunity. Descriptive statistics of the Likert-scale responses suggest that interviewees perceive a disparity between the imperative of access to advanced neurotechnologies for people living in rural and remote areas and the likelihood of achieving such access. The results depict a complex picture of access to functional neurosurgery in Canada with pockets of excellence and a motivation to improve the availability of care for vulnerable populations through the expansion of distributed care models, improved health care system efficiencies, increasing funding and support for patient travel, and increasing awareness about and advocacy for advanced neurotechnologies.

The challenges and opportunities of open-access microscopy facilities.

Microscopy core facilities are increasingly utilised research resources, but they are generally only available to users within the host institution. Such localised access misses an opportunity to facilitate research across a broader user base. Here, we present the model of an open-access microscopy facility, using the Advanced Imaging Center (AIC) at Howard Hughes Medical Institute Janelia Research Campus as an example. The AIC has pioneered a model whereby advanced microscopy technologies and expertise are made accessible to researchers on a global scale. We detail our experiences in addressing the considerable challenges associated with this model for those who may be interested in launching an open-access imaging facility. Importantly, we focus on how this model can empower researchers, particularly those from resource-constrained settings.