When it comes to global health research, borders are taboo. These days, data, care models and evidence from successful demonstration projects are shared quickly, across continents. And scientists, policymakers, health ministries and advocacy organizations all over the world welcome new knowledge to help ease the burden of disease and achieve better health.
“Countries may be very different, but they have similar health challenges,” said Tom Coates, director of the UC Global Health Institute. “A local UC research project could apply to and benefit people all around the world,”
While much global health research has focused on disease and health problems in low- and middle-income countries, there are plenty of health crises close to home that require study and remedies. Even in California, home to the world’s fifth largest economy, large pockets of poverty exist all over the state, in inner cities and rural counties. According to state data, some 20 percent of people in the state live in poverty and can’t afford basic necessities that allow good health.
“When you look at global health problems, many are rooted in disparities — the same kind of disparities that we see in our state and in our UC research,” said Coates, who is also the professor emeritus and founding director of the Center for World Health at UCLA David Geffen School of Medicine. “When we come up with solutions, it’s critical to share them widely.”
It’s not just a one-way road for research dissemination. “While we have a lot to teach, we also have a lot to learn from other countries,” he said.
Low-income countries, for example, show ways to provide public health with fewer dollars and how to mobilize communities of caregivers.
UCSF’s Preterm Birth Initiative and UC Riverside’s HIV + Aging Research Project-Palm Springs are just two of many UC projects that demonstrate the idea that global is local and local is global.
Improving birth outcomes
Preterm birth is the leading cause of newborn deaths around the world. One in 10 babies is born prematurely each year, according to the World Health Organization, and almost 1 million of these infants die within the first months of life. Others face lifelong struggles with health deficits and disabilities.
Researchers with the UCSF Preterm Birth Initiative (PTBi) are finding ways to buck the deadly trend. Working with the Rwanda Ministry of Health and researchers at the Rwanda Biomedical Center and University of Rwanda, they are conducting the largest cluster randomized controlled trial of group prenatal and postnatal care in the world.
As of May, more than 16,000 women in 36 health centers in five Rwandan districts were enrolled in the trial, which offers education and support along with clinical care. In this model of care, developed in the US in the 1990s, pregnant women with similar due dates are assigned to a group of about 10 by their midwife or healthcare provider.
After an initial one-on-one visit, the women return to the clinic together. They check their own blood pressure and weights, which are then reviewed by the midwife, who also examines each woman’s pregnancy and monitors them for complications. Afterward, the women gather for an hour-long meeting on pregnancy-related topics, such as nutrition and self-care. The midwife guides the discussion, but, ideally, group members learn from and support each other.
The group holds three subsequent visits and one postnatal visit about six weeks after delivery.
“Group care helps women feel more confident and comfortable expressing themselves,” said Yvonne Delphine Nsaba Uwera, a Rwandan midwife with UCSF’s PTBi-East Africa. “It empowers women to speak up and talk about their problems and seek help. The group is like a village of women that empowers them during a very vulnerable time, both mentally and physically.”
Researchers suggest that this model has potential to improve perinatal outcomes in other parts of the world, including in the US where the rate of pre-term birth (before 37 weeks) among African American women and Latinas is 50 percent higher than the rate for white women.
A Glow in Fresno
Some 10,000 miles from Rwanda, the UCSF PTBi-California researchers collaborate with Fresno State’s Central Valley Health Policy Institute and First 5 Fresno County, an effort to ensure that children are born healthy.
They created a demonstration project named “Glow!” which, like its sister program in Rwanda, employs group care to reduce preterm births. Fresno County has one of California’s highest rates of babies born prematurely – approximately 1 out of 9 births.
“Pregnancy is supposed to be a time of celebration and excitement,” said Lauren Lessard, principal investigator of Glow! “For women in Fresno, many of them are on Medi-Cal and that poses some challenges — access to child care, transportation, two- to three-hour wait times in the offices and feeling lonely and separated from other women experiencing the same thing.”
“So, what do we do? We disrupt that system,” she said. “We bring in group prenatal care. And good prenatal care means that these women will come together as a community throughout their pregnancy. And at the end of the day, we hope to have improved birth outcomes.”
Similar to the Rwanda program, Glow! offers groups of 12-15 women with similar due dates prenatal and medical care, risk assessments and peer support. It builds on the “centering pregnancy” model of providing medical services in a group setting, while offering a centralized location and an increased focus on stress reduction, mindfulness, importance of sleep, safe relationships, healthy eating, physical activity and other topics.
In addition to group prenatal care, the women receive other benefits such as transportation to sessions, childcare, healthy groceries, behavioral and social services and more.
In its first seven months, Glow! has enrolled some 70 women, who are on MediCal, into the project. Attendance to sessions has averaged a remarkable 90 percent, said Lessard.
“You have to consider that for these women, many of whom are already mothers, fighting poverty — and all that goes with it — is a full-time job,” she said. “They’ve had little time, energy and resources to care for their own health.”
What Lessard has found surprising and rewarding is that women who complete the group sessions often want to stay engaged with their groups or the program. “Many, after they’ve had healthy pregnancies and babies, have asked to stay engaged with the program as mentors to pregnant women. Some have even asked how they can become a doula or birth coach.”
Both the Rwanda and Fresno PTBi programs continue to grow and learn, often from each other. “Programs like Glow! give us an opportunity to see the results from different models and understand what some of the most important components might be,” said Elizabeth Butrick, senior program manager for the UCSF PTBi-East Africa.
In the Rwanda study, mental health in pregnancy has emerged as an issue. Rwanda researchers are thus interested in Fresno findings from its offerings on stress reduction and psychosocial care.
“I think Glow! has done a lovely job as well, responding to women’s needs for transport and childcare and working with provider groups to make the system work for everyone,” said Butrick.
Lessard acknowledged that Glow! learned from Rwanda the importance of stakeholder involvement — from designing the program and through implementation.
“Stakeholder and community collaboration are critical,” said Butrick. “We have partnered throughout with the government agency responsible for health care delivery nationwide in Rwanda. We also did focus groups with women about their needs and conducted pilot group sessions to get their input on content, format and how it worked. Our program was given its Rwandan name by the women in those sessions.”
The program is called “Ibaruke Neza Mubyeyi in Kinyarwanda,” which loosely translated means, “May all pregnant women have a healthy pregnancy, birth and baby.”
The graying of HIV
Thanks to research that has produced powerful antiviral drugs and other treatments, HIV is not the killer it was just two decades ago. Research and medical progress, however, present a different conundrum: How to care for an aging population of people living with HIV.
Globally, 4.2 million people older than 50 have HIV. That number will soar in coming years. Initiatives funded by PEPFAR, The Global Fund and others have made antiretroviral therapies more accessible and extended life for many in sub-Saharan Africa and other countries that, not too long ago, suffered from an AIDS epidemic that seemed hopeless.
In the US, half of the estimated 1.1 million people infected by HIV are older than 50. The National Institute on Aging estimates that a person who begins highly active antiretroviral therapy could live another 30 to 50 years.
As people infected with HIV live longer, they may suffer chronic illness and even show signs of accelerated aging. Does HIV cause premature aging? Or does aging make HIV disease worse? Are communities prepared to address and handle the health and social needs of older people with HIV?
Brandon Brown, a health services researcher and UC Riverside assistant professor in the department of social medicine and population health, is helping get the answers in what may seem an unlikely place – Palm Springs.
That desert city, largely a retirement community in the Coachella Valley, has the highest prevalence of HIV-positive gay men over age 50, said Brown. And it has a nice cluster of sources for research and engagement: stakeholders in the community.
In addition to people with HIV, of course, these stakeholders include leaders of health care and advocacy organizations, health care providers, family caregivers and a slew of researchers, including basic, clinical and social and behavioral researchers.
Brown leads a project, funded by the Patient Centered Outcomes Research Institute (PCORI), which improves health care delivery and outcomes to patients, caregivers and the broader healthcare community by producing evidence-based information.
“We will build the foundational relationships and capacity of stakeholders needed to conduct research on aging and HIV in the region,” said Brown. The project will create a leadership structure for all stakeholders, disseminate knowledge, and identify and explore key topics for new research.
It’s not the dramatic clinical or biomedical research that grabs headlines, but it is important work to make sure other investigators bark up the right research tree as they dig for data about HIV and aging in communities. There’s been a dearth of information on the topic, up to now, he said.
The project, titled “HIV + Aging Research Project-Palm Springs” (HARP-PS), has conducted several focus groups and meetings with stakeholders. They have learned from these groups their health issue priorities and concerns, which include cognitive function and dementia, depression and isolation, financial strain and end-of-life services. Patients are a resilient group, reliant on exercise, friends, support groups and community business organizations, researchers also found.
Patients also weighed in on the research process and participation, including health information confidentiality, burnout from length of studies, research relationships with corporations. These are issues, that if not addressed early on, can thwart a research project.
But it’s not all about gathering information. A key part of the engagement with patients and community members is training them to play a part in all stages of the research project. “When research funding dries up, or when an academic has to move on to another study, we want to make sure that community members have the tools and knowledge to sustain the research and any community health program that grows from the research,” said Brown.
Collaborating and developing communities of caring people and programs and building the capacity to sustain those programs long into the future are hallmarks of today’s global health research, says UCGHI Director Coates.
“And good data and the ability to share information is key to global health,” he said.
The sharing of research has led to vaccines to combat deadly diseases, tools to identify pandemics and even greater investments in public health in countries around the world.
In California and the US, sometimes we’re able to pioneer studies and model programs that have global impact. Other times we get evidence-based information from countries that may have larger patient cases or databases about a pressing health problem here at home, said Coates.
As researchers conquer malaria, HIV, preterm birth and other high-profile global health problems, some cancers and diseases related to obesity remain unsolved or are on the rise globally.
Borderless research will be even more crucial in the pursuit for good global health.