Project

Global Health Equity

Goal: Development of systems and technologies to improve global health. Reducing health disparities with innovative uses of online and mobile health systems. Platforms Developed: Cure4Kids, POND4Kids, Alicanto

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Yuri Quintana
added 3 research items
Objectives: This paper describes a methodology for gathering requirements and early design of remote monitoring technology (RMT) for enhancing patient safety during pandemics using virtual care technologies. As pandemics such as COrona VIrus Disease (COVID-19) progress there is an increasing need for effective virtual care and RMT to support patient care while they are at home. Methods: The authors describe their work in conducting literature reviews by searching PubMed.gov and the grey literature for articles, and government websites with guidelines describing the signs and symptoms of COVID-19, as well as the progression of the disease. The reviews focused on identifying gaps where RMT could be applied in novel ways and formed the basis for the subsequent modelling of use cases for applying RMT described in this paper. Results: The work was conducted in the context of a new Home of the Future laboratory which has been set up at the University of Victoria. The literature review led to the development of a number of object-oriented models for deploying RMT. This modeling is being used for a number of purposes, including for education of students in health infomatics as well as testing of new use cases for RMT with industrial collaborators and projects within the smart home of the future laboratory. Conclusions: Object-oriented modeling, based on analysis of gaps in the literature, was found to be a useful approach for describing, communicating and teaching about potential new uses of RMT.
This paper summarizes the 2020 Diversity in Radiology and Molecular Imaging: What We Need to Know Conference, a three-day virtual conference held September 9–11, 2020. The World Molecular Imaging Society (WMIS) and Stanford University jointly organized this event to provide a forum for WMIS members and affiliates worldwide to openly discuss issues pertaining to diversity in science, technology, engineering, and mathematics (STEM). The participants discussed three main conference themes, “racial diversity in STEM,” “women in STEM,” and “global health,” which were discussed through seven plenary lectures, twelve scientific presentations, and nine roundtable discussions, respectively. Breakout sessions were designed to flip the classroom and seek input from attendees on important topics such as increasing the representation of underrepresented minority (URM) members and women in STEM, generating pipeline programs in the fields of molecular imaging, supporting existing URM and women members in their career pursuits, developing mechanisms to effectively address microaggressions, providing leadership opportunities for URM and women STEM members, improving global health research, and developing strategies to advance culturally competent healthcare.
The COVID-19 pandemic has created multiple opportunities to deploy artificial intelligence (AI)-driven tools and applied interventions to understand, mitigate, and manage the pandemic and its consequences. The disproportionate impact of COVID-19 on racial/ethnic minority and socially disadvantaged populations underscores the need to anticipate and address social inequalities and health disparities in AI development and application. Before the pandemic, there was growing optimism about AI's role in addressing inequities and enhancing personalized care. Unfortunately, ethical and social issues that are encountered in scaling, developing, and applying advanced technologies in health care settings have intensified during the rapidly evolving public health crisis. Critical voices concerned with the disruptive potentials and risk for engineered inequities have called for reexamining ethical guidelines in the development and application of AI. This paper proposes a framework to incorporate ethical AI principles into the development process in ways that intentionally promote racial health equity and social justice. Without centering on equity, justice, and ethical AI, these tools may exacerbate structural inequities that can lead to disparate health outcomes.
Yuri Quintana
added a research item
The COVID-19 pandemic has created multiple opportunities to implement Artificial Intelligence (AI) technologies in new ways that address the initial infectious curve (e.g., triaging patients and disseminating information during disease outbreaks), as well as the subsequent curves of pandemic sequelae (managing gaps in care of chronic conditions, addressing new and exacerbated mental health needs, and rectifying worsening health disparities. However, numerous challenges limit scaling development and application of AI technologies in healthcare settings, especially in the context of a rapidly evolving public health emergency. Data representing diverse patient cohorts are necessary both to train and to test systems but often are labor intensive to create and deidentify. The need for new codes and concepts can delay data availability. Biases in data must be identified, evaluated, and managed to mitigate downstream effects. System performance must be continuously monitored and validated as clinical information, such as disease transmission characteristics, become available. This panel will discuss these challenges and propose solutions that include ensuring adequate, equitable, and unbiased data sources are used for AI development, validation of AI in clinical settings, with the context of the rapidly evolving COVID-19 public health crisis as a discussion focus.
Yuri Quintana
added a research item
Purpose: Pediatric cancer represents 1% to 4% of all cancers worldwide, with the majority of diagnoses in developing countries where mortality remains much higher than that in high-income countries. We sought to describe differences in ethical decision-making at the end of life among an international sample of pediatric oncologists practicing in countries with a variety of income levels and resource settings. Methods: Pediatric oncologists subscribing to an educational international oncology Web site were invited to complete a 38-item web-based survey investigating ethical domains related to end-of-life care: level of care, fiduciary responsibility, decision making, and justice. Results: Responses were received from 401 physicians in 83 countries, with most respondents practicing in middle-income or high-income countries. Significant differences in attitudes toward ethical issues existed across the national developmental indices. Conclusions: Further education on ethical principles is warranted in pediatric oncology, particularly among oncologists practicing in low-income or middle-income countries.
Yuri Quintana
added a project goal
Development of systems and technologies to improve global health. Reducing health disparities with innovative uses of online and mobile health systems. Platforms Developed: Cure4Kids, POND4Kids, Alicanto
 
Yuri Quintana
added 2 research items
Aims Childhood cancer survival is suboptimal in most low- and middle-income countries (LMICs). Radiotherapy plays a significant role in the standard care of many patients. To assess the current status of paediatric radiotherapy, the International Atomic Energy Agency (IAEA) undertook a global survey and a review of practice in eight leading treatment centres in middle-income countries (MICs) under Coordinated Research Project E3.30.31; ‘Paediatric radiation oncology practice in low and middle income countries: a patterns-of-care study by the International Atomic Energy Agency.’ Materials and methods A survey of paediatric radiotherapy practices was distributed to 189 centres worldwide. Eight leading radiotherapy centres in MICs treating a significant number of children were selected and developed a database of individual patients treated in their centres comprising 46 variables related to radiotherapy technique. Results Data were received from 134 radiotherapy centres in 42 countries. The percentage of children treated with curative intent fell sequentially from high-income countries (HICs; 82%) to low-income countries (53%). Increasing deficiencies were identified in diagnostic imaging, radiation staff numbers, radiotherapy technology and supportive care. More than 92.3% of centres in HICs practice multidisciplinary tumour board decision making, whereas only 65.5% of centres in LMICs use this process. Clinical guidelines were used in most centres. Practice in the eight specialist centres in MICs approximated more closely to that in HICs, but only 52% of patients were treated according to national/international protocols whereas institution-based protocols were used in 41%. Conclusions Quality levels in paediatric radiotherapy differ among countries but also between centres within countries. In many LMICs, resources are scarce, coordination with paediatric oncology is poor or non-existent and access to supportive care is limited. Multidisciplinary treatment planning enhances care and development may represent an area where external partners can help. Commitment to the use of protocols is evident, but current international guidelines may lack relevance; the development of resources that reflect the capacity and needs of LMICs is required. In some LMICs, there are already leading centres experienced in paediatric radiotherapy where patient care approximates to that in HICs. These centres have the potential to drive improvements in service, training, mentorship and research in their regions and ultimately to improve the care and outcomes for paediatric cancer patients.
Although prostate cancer is the leading cause of cancer mortality for African men, the vast majority of known disease associations have been detected in European study cohorts. Furthermore, most genome-wide association studies have used genotyping arrays that are hindered by SNP ascertainment bias. To overcome these disparities in genomic medicine, the Men of African Descent and Carcinoma of the Prostate (MADCaP) Network has developed a genotyping array that is optimized for African populations. The MADCaP Array contains more than 1.5 million markers and an imputation backbone that successfully tags over 94% of common genetic variants in African populations. This array also has a high density of markers in genomic regions associated with cancer susceptibility, including 8q24. We assessed the effectiveness of the MADCaP Array by genotyping 399 prostate cancer cases and 403 controls from seven urban study sites in sub-Saharan Africa. Samples from Ghana and Nigeria clustered together, whereas samples from Senegal and South Africa yielded distinct ancestry clusters. Using the MADCaP array, we identified cancer-associated loci that have large allele frequency differences across African populations. Polygenic risk scores for prostate cancer were higher in Nigeria than in Senegal. In summary, individual and population-level differences in prostate cancer risk were revealed using a novel genotyping array. Significance This study presents an Africa-specific genotyping array, which enables investigators to identify novel disease associations and to fine-map genetic loci that are associated with prostate and other cancers.
Yuri Quintana
added 7 research items
People-centered health care seeks an active role for the patient while empowering all other members of the health care team. By promoting greater patient responsibility and optimal usage, patient-centered health care leads to improved health outcomes , quality of life and optimal value for health care investment. This paper reviews some definitions of people-centered health care and various e-health approaches around the world used to implement this vision. The barriers and en-ablers to implementation this type of approach are explored. This paper provides a proposed research agenda for future implementations of people-centered e-health.
Delivering health care to a growing world population and to communities in underserved areas is a major global health challenge. Over the last few decades, many approaches have been developed under various frameworks such as telemedicine, telehealth, eHealth, and mhealth. This chapter reviews the evolution of these networks for coordination of patient care and elder care. We discuss the challenges in the design, implementation and evaluation of these systems, and outline some opportunities and challenges for future development.
Although prostate cancer is the leading cause of cancer mortality for African men, the vast majority of known disease associations have been detected in European study cohorts. Furthermore, most genome-wide association studies have used genotyping arrays that are hindered by SNP ascertainment bias. To overcome these disparities in genomic medicine, the M en of A frican D escent and Ca rcinoma of the P rostate (MADCaP) Network has developed a genotyping array that is optimized for African populations. The MADCaP Array contains more than 1.5 million markers and an imputation backbone that successfully tags over 94% of common genetic variants in African populations. This array also has a high density of markers in genomic regions associated with cancer susceptibility, including 8q24. We assessed the effectiveness of the MADCaP Array by genotyping 399 prostate cancer cases and 403 controls from seven urban study sites in sub-Saharan Africa. We find that samples from Ghana and Nigeria cluster together, while samples from Senegal and South Africa yield distinct ancestry clusters. Using the MADCaP array, we identified cancer-associated loci that have large allele frequency differences across African populations. Polygenic risk scores were also generated for each genome in the MADCaP pilot dataset, and we found that predicted risks of CaP are lower in Senegal and higher in Nigeria. Significance We have developed an Africa-specific genotyping array which enables investigators to identify novel disease associations and to fine-map genetic loci that are associated with prostate and other cancers.
Yuri Quintana
added 2 research items
Purpose: Health research in low- and middle-income countries can generate novel scientific knowledge and improve clinical care, fostering population health improvements to prevent premature death. Project management is a critical part of the success of this research, applying knowledge, skills, tools, and techniques to accomplish required goals. Here, we describe the development and implementation of tools to support a multifaceted study of prostate cancer in Africa, focusing on building strategic and operational capacity. Methods: Applying a learning organizational framework, we developed and implemented a project management toolkit (PMT) that includes a management process flowchart, a cyclical center-specific schedule of activities, periodic reporting and communication, and center-specific monitoring and evaluation metrics. Results: The PMT was successfully deployed during year one of the project with effective component implementation occurring through periodic cycles of dissemination and feedback to local center project managers. A specific evaluation was conducted 1 year after study initiation to obtain enrollment data, evaluate individual quality control management plans, and undertake risk log assessments and follow-up. Pilot data obtained identified areas in which centers required mentoring, strengthening, and capacity development. Strategies were implemented to improve project goals and operational capacity through local problem solving, conducting quality control checks and following compliancy with study aims. Moving forward, centers will perform quarterly evaluations and initiate strengthening measures as required. Conclusion: The PMT has fostered the development of both strategic and operational capacity across project centers. Investment in project management resources is essential to ensuring high-quality, impactful health research in low- and middle-income countries.
Purpose: Cancer of the prostate (CaP) is the leading cancer among men in sub-Saharan Africa (SSA). A substantial proportion of these men with CaP are diagnosed at late (usually incurable) stages, yet little is known about the etiology of CaP in SSA. Methods: We established the Men of African Descent and Carcinoma of the Prostate Network, which includes seven SSA centers partnering with five US centers to study the genetics and epidemiology of CaP in SSA. We developed common data elements and instruments, regulatory infrastructure, and biosample collection, processing, and shipping protocols. We tested this infrastructure by collecting epidemiologic, medical record, and genomic data from a total of 311 patients with CaP and 218 matched controls recruited at the seven SSA centers. We extracted genomic DNA from whole blood, buffy coat, or buccal swabs from 265 participants and shipped it to the Center for Inherited Disease Research (Baltimore, MD) and the Centre for Proteomics and Genomics Research (Cape Town, South Africa), where genotypes were generated using the UK Biobank Axiom Array. Results: We used common instruments for data collection and entered data into the shared database. Double-entered data from pilot participants showed a 95% to 98% concordance rate, suggesting that data can be collected, entered, and stored with a high degree of accuracy. Genotypes were obtained from 95% of tested DNA samples (100% from blood-derived DNA samples) with high concordance across laboratories. Conclusion: We provide approaches that can produce high-quality epidemiologic and genomic data in multicenter studies of cancer in SSA.
Yuri Quintana
added a research item
Objective Adherence to antiretroviral therapy (ART) is paramount to successful long-term suppression of human immunodeficiency virus (HIV). For poorly adherent patients with HIV, barriers to remaining adherent may be overcome by the implementation of targeted interventions delivered via mobile devices. This systematic review is focused specifically on mobile phone technologies to deliver adherence interventions in HIV/acquired immunodeficiency syndrome (AIDS) populations. Methods This review (PROSPERO #CRD42017065131) systematically extracted data from published literature from five databases on mobile phone interventions to improve adherence to ART for HIV. The reported studies had been conducted between 2007 and 2017. Risk of bias was assessed using the Cochrane method ranking each criterion as low, high, or unclear risk of bias. Results Of the 835 articles returned, we identified 26 randomized controlled trials (RCTs), retrospective and prospective cohort trials, or mixed method studies with a comparison group that fit criteria for inclusion. No standard measure of adherence was consistent throughout the examined studies, and assessments by self-report, pill counting, and medication event monitoring system (MEMS) were utilized. The studies reported mixed results, with 17 reporting significant improvements to adherence, 3 reporting improvements without supplying p-values, and 6 reporting no significant change or a reduction in adherence. Conclusion The mixed nature of the results exemplifies the need for more comprehensive approaches and larger scale trials to confirm results observed in limited cohort sizes. To better retain satisfactory adherence within the HIV population, and especially in low-resource settings, we recommend that future interventions incorporate multiple strategies: mobile-based reminders, social support structures, and personalized content.
Yuri Quintana
added an update
I wlll be giving the following webinar talk "Bioinformatics for Discovery & Global Collaborations: Approaches and Lessons Learned" Feb 27, 2018, 2:00 PM – 3:00 PM EST, to the Allergen Research Network. Event is free to all. Register at http://allergen-nce.ca/events/allergen-webinars/#quintana
The follow chapter is available via research gate.
Global Health Informatics—An Overview. By Yuri Quintana, Charles Safran. In Heimar de Fátima Marin, Eduardo Massad, Marco Antonio Gutierrez, Roberto J. Rodrigues and Daniel Sigulem, editors: Marin-Global Health Informatics, Oxford: Academic Press, 2017, pp. 1-13. e.
Quintana, Y. Challenges to Implementation of Global Translational Collaboration Platforms. MOJ Proteom Bioinform. 2015;2(6):65. PubMed PMID: 26798845; PubMed Central PMCID: PMC4717481
 
Yuri Quintana
added an update
I am happy to let you know that a panel on e-health will be held at AMIA 2017 Annual conference https://www.amia.org/amia2017 . I hope you will be able to join us.
Latin American e-Health Programs and WHO/PAHO Planning Toolkit
Yuri Quintana, PhD1, David Novillo-Ortiz, PhD2, PhD, Heimar de F. Marin, RN, PhD3, Marcelo A. Logetegui, MD, MS4, Mario R, Cubillo, MBA5, Paula Otero, MD6
1Harvard University, Boston, MA, USA, State; 2Pan American Health Organization, Washington, DC, USA, 3Alumni Professor, Federal University of São Paulo, Brazil, 4Clínica Alemana de Santiago, Santiago, Chile, 5Hospital San Vicente de Paul de Heredia, Heredia, Costa Rica, Hospital 6Italiano de Buenos Aires, Buenos Aires, Argentina
Abstract
The goal of this panel is to provide an overview major initiatives in Latin America, provide an overview of the World Health Organization (WHO) national e-health strategic planning toolkit, challenges in implementation of e-health systems, overview of the PAHO e-health strategy for the Americas, and provide approaches for implementing programs using cooperative models.
Learning Objectives
1. Identify challenges for the development of e-health in the Latin American region
2. Describe the priority areas for e-health development and informatics training
3. Discuss challenges in deployment and support of informatics systems in clinical and public health sectors
Panel Description
This goal of this panel is to provide an overview major initiatives in Latin America, provide an overview of the Pan American Health Organization/World Health Organization (PAHO/WHO) national e-health strategic planning toolkit, challenges in implementation of e-health systems, overview of the PAHO e-health strategy for the Americas, and provide approaches for implementing programs using cooperative models.
Key Topics
1. Present examples of e-health Initiatives and strategies in Latin America
2. Provide overview of the PAHO/WHO National e-health strategic planning toolkit
3. Discuss models of public-private cooperation for global health challenges
4. Discuss strategies for managing non-communicable diseases
5. Discuss human-centric approaches to healthcare services
6. Discuss ways for managing the risks and impact of current and future epidemics
Speakers
· Session Moderator Yuri Quintana, PhD
· The PAHO/WHO National e-health strategic planning toolkit, WHO Third Global Survey on eHealth ( Region of the Americas), and e-health Initiatives and strategies in Latin America, David Novillo, PhD
· E-Health Strategies in Brazil, Heimar Marin, RN, PhD
· Digital Strategy at Clinica Alemana, Santiago Chile, Marcelo Lopetegui, MD, MS
· Digital Strategies in Costa Rica and RACSEL Red Americana de Cooperación para el desarrollo de la Salud Electronica, Mario Ruiz Cubillo, MD
· Clinical Informatics Training Programs, Paula Otero, MD,
Why this topic is important
· Latin America has a growing e-health sector and academic informatics programs
· There synergies and common experiences that can be shared among these programs
· There is an opportunity for AMIA members to be more involved in Latin America via informal networks and formal collaborations
 
Yuri Quintana
added 8 research items
The Pediatric Oncology Networked Database (POND4Kids) is an online, multilingual database for pediatric hematology/oncology patients. Its purpose is to improve the care of pediatric oncology patients in countries with limited resources by the exchange of information and experience between oncologists in diverse geographic regions who practice in a similar medical environment.
This poster describes the open source medical system architecture and approaches for data sharing and interoperability.
Translational Collaboration Platforms connect clinical, genomics, and patient-reported data for the advancement of biomedical research, providing an opportunity to speed up the translating of basic science findings into clinical applications and new medicines. These platforms bring together data from both clinical and research databases and provide opportunities for multi-disciplinary research. Recent years have seen a significant growth of these platforms and some global collaborations research networks have been established using these platforms. In this brief summary of these platforms, we examine the challenges in implementation for global international research collaborations and challenges for the sustainability of research networks. (PMID: 26798845 [PubMed] PMCID: PMC4717481 Free PMC Article)
Yuri Quintana
added an update
Project goal
Evaluate design of global health informatics platforms
Background and motivation
Evaluate the design, implementation of use of global health informatics platforms for education, data sharing, and international collaborations