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.
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.
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.
We provide approaches that can produce high-quality epidemiologic and genomic data in multicenter studies of cancer in SSA.
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. Projectmanagement 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 prostatecancer in Africa, focusing on building strategic and operational capacity.
Applying a learning organizational framework, we developed and implemented a projectmanagement 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.
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.
The PMT has fostered the development of both strategic and operational capacity across project centers. Investment in projectmanagement resources is essential to ensuring high-quality, impactful health research in low- and middle-income countries.
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.
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.
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.
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.
A major challenge in global health is improving newborn and maternal health. A variety of economic, geopolitical, socio-cultural, and technical factors are involved. Online and mobile technologies hold the potential to improve maternal and newborn health by supporting access to education, improving coordinated care, and facilitating patient support. These online and mobile systems have been designed to address a variety of maternal and newborn health outcomes, including: increasing antenatal care attendance; cessation of unhealthy behaviors, such as smoking and drinking alcohol; and increasing vaccination rates of newborns. The success of these systems, however, is very much dependent on how—and whether—they can effect behavioral changes in culturally appropriate ways. This chapter reviews the design of these systems in both developed and developing countries, the technologies and behavioral frameworks used, and the evaluation outcomes. The acceptance of these new patient support networks requires the trust of patients and healthcare providers. Hence, this chapter also reviews the evolution of these systems, and the potential benefits of, and challenges for, their sustained operation.
Los juegos aplicados en salud educan, entretienen y favorecen un mejor acceso de los usuarios al mundo sanitario en todas sus vertientes. Además, para este sector suponen una oportunidad sin precedentes en lo relativo a la motivación y el cambio de conducta de las personas en relación a sus enfermedades y dolencias. Estos juegos se diseñan para promover mejores resultados en la salud de los pacientes, para mejorar la formación de los profesionales implicados y promover la educación al servicio de la salud. La industria del juego aplicado en salud está valorada en miles de millones de euros y dispone de centenares de productos y prototipos que se han diseñado desde los ámbitos académico y comercial. Este libro analiza las mejoras en el sector y nos proporciona un marco de evaluación, diseño y estrategia que además quiere ser sostenible.
The book is available for ordering online at this web page and Amazon in Spain and USA.
Serious games for health educate, entertain and improve access to healthcare services. In addition, they represent an unprecedented opportunity to motivate and change people's behavior in relation to their illnesses and conditions. These games are designed to promote better health outcomes for patients, and also to improve the training of the professionals involved in promoting education and health services. The health gaming industry is valued at billions of euros and has hundreds of products and prototypes that have been designed from the academic and commercial fields. This book analyzes the improvements in the sector and provides us with an evaluation, design and strategy framework for sustainable systems
Aging creates new information and communication needs for families who are helping to coordinate care for frail parents. To identify how information and communication needs evolve with the aging process, we created a living laboratory of families, supported by an online private social network with tools for care coordination. Site registrants are invite to participate in a more in-depth survey-based longitudinal study. In year one, we assessed the feasibility of an online living laboratory. During this first year, 155 individuals registered on InfoSAGE, and 26% opted into the more in-depth longitudinal study. The survey response rate for those in the study was 61%. We present here a descriptive analysis of our early participants and networks, as well as barriers to participation that the study team encountered. PubMed PMID: 28186055.
Global Health Informatics is a growing multidisciplinary field that combines research methods and applications of technology to improve healthcare systems and outcomes. Healthcare systems are facing many challenges including a growing population, the increasing complexity of care services, and limited resources to deliver services. These challenges will require more innovative approaches to scale healthcare services to larger numbers of people. This chapter outlines health informatics systems that have been developed to address these problems.
In 2006, St. Jude Children’s Research Hospital (Memphis, Tennessee) began developing a school-based outreach program known as the St. Jude Cancer Education for Children Program (SJCECP). The aim of this program is to teach Memphis-area children about cells, cancer, and healthy habits that can prevent the development of cancer in adulthood. Initial plans for delivery of the program was for St. Jude staff to present the program at local schools. This plan for disseminating instruction was not feasible due to the limited availability of St. Jude staff. As a next step, during the 2012–2014 academic years, we conducted a study entitled SJCECP2, utilizing the SJCECP curriculum, with the objective of evaluating the impact of the educational intervention on knowledge acquisition and retention among fourth-grade students participating in a modified, teacher-led version of the program. Eighteen teachers and 426 students from 10 local schools in the greater Memphis area participated in the program evaluation. This study used a single-group, pre-test/post-test design to determine the impact of the SJCECP intervention on changes in knowledge scores among fourth-grade students. Testing was on cells, cancer, and healthy living. The mean scores increased from 6.45 to 8.12, 5.99 to 7.65, and 5.92 to 7.96 on cell, cancer, and health behaviors units, respectively (all p values <.001). Preliminary evidence suggests that the SJCECP2 intervention is a useful tool for teachers to improve student knowledge of knowledge of cells, cancer, and healthy living concepts at the fourth-grade level.
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.
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 enablers to implementation this type of approach are explored. This paper provides a proposed research agenda for future implementations of people-centered e-health.
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.
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.
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.
Further education on ethical principles is warranted in pediatric oncology, particularly among oncologists practicing in low-income or middle-income countries.
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.
Keywords: Translational Platforms, Collaboration, Global Health, Big Data, Genomics, Clinical Informatics, International Research
PubMed PMID: 26798845; PubMed Central PMCID: PMC4717481.
The Pediatric Oncology Network Database, (www.pond4kids.org, POND), is a secure, web-based, multilingual pediatric hematology/oncology database created for use in countries with limited resources to meet various clinical data management needs including cancer registration, delivery of protocol-based care, outcome evaluation, and assessment of psychosocial support programs. Established as a part of the International Outreach Program at St. Jude Children's Research Hospital in Memphis, Tennessee, POND serves as a tool for oncology units to store patient data for easy retrieval and analysis and to achieve uniform data collection to facilitate meaningful comparison of information among centers. Launched in 2003, POND now has 233 sites registered with over 1,000 users in 66 countries. However, adoption and usage of POND varies widely among sites. This paper reviews some of the challenges to developing a global collaborative clinical platform based on the experiences of developing POND. The paper also presents a case study of POND use in Guatemala, where the Guatemalan National Oncology Unit (UNOP) has developed extensive internal and external global collaborations using POND.
Over half the deaths from disease in the world are now due to just four chronic conditions – diabetes, lung diseases, some cancers and heart disease. Health and education are inextricably linked. Developing and delivering effective, scalable and sustainable education programs which lead to real behavioral change would influence some of the common risk factors for these diseases, such as smoking, poor diet and lack of physical activity. This book contains the selected papers from the St. Jude Cure4Kids Global Summit, held in June, 2011 at St. Jude Children's Research Hospital in Memphis, Tennessee, USA. The aim of this three-day conference was to improve health and science education in classrooms and communities around the world. Leading educators, innovators and pioneers in the field of public health came together in a multidisciplinary forum to explore examples of successful education programs, analyze the challenges in designing effective, scalable and cost-efficient public health education programs and identify strategies, methodologies and incentives for developing future programs capable of yielding large-scale improvements in health outcomes for diverse communities. The papers presented here provide a foundation in the key topics necessary to create future innovative health promotion programs, and will be of interest to all those whose work involves improving health outcomes by means of better and more effective health education.
People-centered health care systems aim to empower people with their health care decisions, make information more accessible, and enable more autonomy. The goal is to promote well-being as much as to treat disease, and to create more collaboration between providers, patients, and their families, thus reducing costs and improving health outcomes. Throughout the world growing populations and rising costs are challenging health care systems. In numerous countries, health care providers are unable to meet the needs of many individuals and groups due to limited budgets, time, and staff. An aging population and rapidly increasing rates of chronic diseases could overwhelm most health care systems. While information and communication technologies can connect health care providers with each other and the consumers they serve, there is no group, organization, or government that has successfully overcome the roadblocks to implementing a wide people-centered health system. Ideally, such a system would put the needs of the public first, enable individuals to take greater responsibility for managing their own health and health services, and promote optimal levels of health and resource utilization. In this paper, we explore a vision for future people-centered health care systems that could provide better access to information and decision-making tools for patients, health care providers, and the general public. We also examine key challenges to creating such systems.