As the global community comes together in August to celebrate the Olympic Games, it reminds us of the unique contributions that our world neighbors have to share. A new Global Health Research Affinity Group (Global Health RAG) at The Children’s Hospital of Philadelphia is promoting this same spirit of innovative cooperation to advance international pediatric research.
A growing number of researchers at CHOP are involved in global health efforts aiming to improve clinical, public health, and other interventions in limited-resource settings. Projects are underway in at least 14 countries, including some in sub-Saharan Africa, Latin America, and Asia. Many of these low-income communities have huge populations of children who are suffering from preventable and treatable illnesses.
“The expertise and technology we have here at CHOP could play a big role in expanding care for these children,” said Elizabeth Lowenthal, MD, MSCE, research director for CHOP’s Global Health Center and leader of the Global Health RAG, who has been working in resource-limited settings for 13 years and has ongoing research in Botswana, Zimbabwe, and the Dominican Republic. “And research elsewhere can inform care here.”
For example, Dr. Lowenthal provides care as a CHOP attending physician for a few hundred children who are affected by HIV. Prior to coming to CHOP, she worked at a clinic in Botswana where she cared for thousands of children with HIV. In order to answer important HIV-related research questions that could benefit her CHOP patients, she could coordinate a multisite study throughout the U.S. But often that same question could be answered more efficiently at a single site in Botswana. Her current research there focuses on how to optimize adherence to antiretroviral therapy among perinatally HIV-infected adolescents.
Now that the Global Health RAG has launched, investigators can learn from their own backyard about the challenges unique to global health research. It will provide a forum to raise awareness about existing resources and infrastructure available within CHOP, the Penn Center for Global Health and other affiliated groups such as the Penn Center for AIDS Research (CFAR) that support international pediatric research. And it will foster collaborative efforts between interdisciplinary and multidisciplinary investigators who have common research interests.
“The Global Health Research Affinity Group will help pool the body of knowledge and share how those of us who have done this sort of work have dealt with the practical and ethical considerations that often come up,” said Dr. Lowenthal, who also is an assistant professor of Pediatrics and Epidemiology at the Perelman School of Medicine at the University of Pennsylvania.
In Botswana, Dr. Lowenthal’s study team had to navigate one of those research challenges when they realized that adolescents weren’t being forthright when an adult research assistant asked them research questions related to their personal health behaviors, such as sexual activity and drug and alcohol use. As a solution, the investigators set up computers with software that allowed them to ask the same questions using audio computer-assisted self- interview (ACASI).
The research participants now wear headphones and answer questions pre-recorded in their language by local university students. The voices the participants hear are matched to their age and gender. About one-third of the research participants using the ACASI admitted that they were alcohol or drug users; during the face-to-face questioning, none of them did. The study team also worked with CHOP’s information systems experts to ensure that the data generated by the ACASI could be uploaded securely and anonymously to CHOP’s servers.
Another issue that required some thought and negotiation was finding a common ground that satisfied local standards in the Dominican Republic and institutional review board standards at CHOP requiring parent/guardian consent for a child’s research participation. When a child is an orphan in a low-resource setting, his or her caregiver may not be able to provide legal guardianship documentation, Dr. Lowenthal explained. She discussed this with the head of the national institutional review board in the Dominican Republic who suggested a locally-acceptable alternative in which the guardian who is not the parent would sign to state their guardianship, and someone unrelated to the study also would sign as a witness.
“These are the kind of hoops that we’ve jumped through, and now through the RAG we’ll be able to talk with other CHOP researchers who are thinking of new studies about these solutions so they don’t have to jump through those same hoops independently again and again,” Dr. Lowenthal said.
Other potential complications that global health researchers commonly encounter include financial management, data security in settings with limited internet access, onboarding foreign research staff, and reporting results to appropriate international stakeholders. The Global Health RAG will support researchers as they troubleshoot, share best practices, and find creative solutions in these areas.
A key goal for the Global Health RAG is to foster pediatric research collaborations by linking investigators who have a passion for working in resource-limited settings but previously may have been unaware of the global health projects that their colleagues are pursuing. Here is a quick look at some of the diverse and novel studies in progress by CHOP-based investigators that the Global Health RAG is helping to guide on their research journeys:
While these projects still have a ways to go, their results eventually could catalyze improvements in pediatric health worldwide. And Dr. Lowenthal is excited that Global Health RAG members will be along for the ride.
“I hope the Global Health RAG will bring us all together and give us some inspiration on how we can expand and strengthen our programs and systems within the institution to allow us to have strong collaborations on the other end,” Dr. Lowenthal said. “I’d like to hear from CHOP researchers about the amazing global health research they’re doing and what their dreams are so that we can help them to find potential collaborators and move their ideas forward.”
For more information on the Global Health RAG, contact Dr. Lowenthal or Jennifer Chapman, MPH, administrative lead for the group. And be on the lookout for an upcoming half-day CHOP Global Health Research Retreat.
Produced by The Children’s Hospital of Philadelphia Research Institute.
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