Physician-Scientists Do International Research鈥攆or the World and Rochester
In a Zambian hospital far from the country鈥檚 famous view of Victoria Falls plunging into the Zambezi River, 麻豆视频neurologist Gretchen L. Birbeck, MD, MPH, works on something equally lofty鈥攇lobal health.
Birbeck鈥檚 research on how to prevent post-malaria epilepsy may benefit Zambians and populations around the globe, including patients living 7,000 miles away in Rochester.
Continents away, in Argentina and Mexico, Francisco Cartujano-Barrera, MD, conducts smoking-cessation research where community support and infrastructure can be stronger than in the United States. That means results can arrive more quickly and sometimes with lower costs鈥攁nd what鈥檚 learned can help inform studies done here involving hard-to-reach populations.
Gretchen L. Birbeck, MD, MPH, conducting research in Zambia.
鈥淕lobal health equity is an obligation for rich countries,鈥� says Paul R. Bohjanen, MD, chief of URMC鈥檚 Infectious Diseases Division and an HIV researcher in Uganda for the past 20 years. 鈥淲ithout international research, HIV would have decimated much of the world.鈥�
Birbeck, Cartujano-Barrera, and Bohjanen are just three of the many Rochester doctors and researchers engaged in international research. It鈥檚 not only about investigation into treatment of disease but also about building sustainable health care 鈥渃apacity鈥� in the host country, preparing it to prevent, treat, and stem the spread of disease.
In a sense, all medical research has international implications. A disease spreading in one country is a threat to every country. And there鈥檚 the humanitarian piece.
鈥淚t鈥檚 in our own best interest to participate in global health,鈥� says Birbeck, who has conducted research in Zambia for 30 years. 鈥淢any of the insights we gain from work conducted in places like rural Zambia inform research and care for patients in the US as well.鈥�
And in some cases, the research can only be done internationally. Whatever the reason, these efforts come with challenges and rewards. In big ways and small, they are changing lives鈥攖hose of participants and international populations and, in some cases, of the researchers themselves.
Helping There Helps Here
The ultimate cycle of international research occurs when a local program leads to global efforts that come back home to enrich local research.
When Wilmot Cancer Institute Director Jonathan W. Friedberg, MD, MMSc, used a data-mapping tool to assess the needs of residents in the Rochester region, he found high rates of cancer, particularly lung cancer: Incidences were 20 percent above the national average.
Smoking is the leading cause of lung cancer, so the Institute鈥檚 Office of Community Outreach and Engagement (COE) decided to focus on a cessation program. But that meant breaking down barriers in order to do it effectively, especially with the program鈥檚 emphasis on underrepresented and underserved populations.
鈥淲e must get out from our walls鈥攚e have to get out there to the community.鈥�
Reaching an accurately diverse population requires coming up with solutions 鈥渨ith the community,鈥� says social-behavioral scientist Ana Paula Cupertino, PhD, who was recruited four years ago to serve as the new COE associate director. 鈥淲e must get out from our walls鈥攚e have to get out there to the community.鈥�
Moving beyond the walls of the Medical Center has meant hosting community discussions, conducting local studies to determine effectiveness鈥攁nd drawing on the advantages of international research.
Cupertino and Cartujano-Barrera鈥攁 COE assistant director鈥攈ave decades of experience between the two of them conducting research in Brazil, Guatemala, and Mexico.
This is proving important because in the US, Latinos have often been overlooked in research due to a lack of outreach programs. Generally, the only Latinos included in studies used to be the ones who participated on their own. That amounted to very few. Language barriers and disconnection from some mainstream institutions mean that important health messages, including research studies, don鈥檛 always reach this population.
Information about studies was often not translated, and some of it was culturally insensitive. Cartujano-Barrera also notes that many Latinos have an 鈥淚 can do this by myself鈥� attitude when trying to quit smoking. But research shows that culturally appropriate methods can draw Latinos into cessation programs.
Past mistakes such as linguistic and culturally inappropriate messaging have contributed to a sense of distrust that many US Latinos hold toward medical institutions.
Those barriers, Cartujano-Barrera says, are lower or absent in Mexico, where universal health care provides an infrastructure that allows researchers to quickly identify individuals who would benefit from a smoking-cessation program鈥攔egardless of their socioeconomic status. A strong community connection and more trust in medical institutions also boosts the ease of conducting a study.
Data gathered in studies conducted in Mexico continue to provide valuable information about how to effectively run new smoking-cessation programs at home, says Cartujano-Barrera, who focuses on using mobile phones to deliver messaging. The research can be applied to the large Mexican population in the US as well, and it contributes to global health equity through shared research expertise.
Cartujano-Barrera is also heading up a five-year, NCI-funded smoking-cessation study in Argentina that is focused on the transgender community. Argentina, like Mexico, has strong community support and an established infrastructure to enable effective implementation of the study.
And solutions are needed there. More than 40 percent of transgender individuals smoke, placing an additional health burden on a vulnerable community already plagued by high rates of HIV and suicide. Often treated as social outcasts, members of this community generally suffer from high stress levels.
Most significant is that the researchers aren鈥檛 imposing their agenda on the population.
鈥淭he transgender community in Argentina set smoking cessation as a priority; this is their project. They are empowered,鈥� says Cartujano-Barrera, who will serve as principal investigator along with Ines Aristegui, PhD, and Raul Meja, MD, PhD, researchers from Fundaci贸n Hu茅sped, a nonprofit organization in Argentina. The team is enhanced by the leadership of Nadir Cardozo, a stakeholder in the transgender community.
Among transgender women in Argentina, cigarette smoking is associated with low educational levels, hazardous drinking, and drug use. The study seeks to answer how these and other factors鈥攕uch as experiencing transphobia鈥攁ffect a person鈥檚 ability to quit.
Argentina is the perfect setting for this first-ever smoking-cessation trial with the transgender community, and the study has important implications for the US. Findings will expand the global understanding of tobacco use and cessation among transgender individuals. Moreover, methodologies are replicable and can inform subsequent smoking-cessation trials for US transgender individuals.
In a study published on December 5, 2023, in Frontiers in Public Health, Cartujano-Barrera and his team reported that transgender women in Argentina smoke at twice the rate as cisgender women. This supplies critical information in building a cessation plan both there and at home.
Key to making participants feel comfortable is the use of mobile messaging, which helps protect their privacy. It鈥檚 this sort of research expertise that can translate around the world.
鈥淕ood Intentions Are Not Enough鈥�
Conducting international research adds complexity to researchers鈥� ethical responsibilities. The study in Argentina, addressing a community鈥檚 stated needs, is an ideal model. In past years, research was sometimes conducted in a paternalistic or predatory manner. The wealthy country used the population of a poorer country as study subjects, then went home鈥攍eaving participants no better off or only temporarily helped.
Without building the host country鈥檚 capacity, international research is unethical. 鈥淕ood intentions are not enough, and every donation is not a gift,鈥� Birbeck and others noted in a viewpoint article in the January 2, 2024, issue of JAMA Neurology.
International research should fulfill the needs and priorities of the local population, make effective use of skilled local professionals, and create a sustainable mentoring program to ensure that the country receives long-term benefits.
For example, Birbeck explains it鈥檚 unethical for a researcher to test treatment on an international study participant with no intention of ensuring a reliable supply of medications.
Sometimes international studies are the only way to understand a disease.
Bohjanen researches HIV in Uganda because patients there still develop complications as a result of HIV infection. The US population still experiences such complications but at a much lower rate, so it鈥檚 difficult to study the best treatments based only on research performed in the US.
International research can also serve as an agent for change in public policy. In Uganda, Bohjanen鈥檚 work has demonstrated to the country鈥檚 government what can be done to alleviate health problems.
When Bohjanen made his first trip to Uganda in 2003, he visited a hospice and asked doctors how many had family members with HIV.
鈥淓very one of these doctors raised their hands,鈥� Bohjanen says. 鈥淣ow I think less than 20 percent would raise their hands.鈥�
The prevalence of HIV infections in Uganda鈥檚 capital of Kampala has dropped from 28 percent to just 3 percent in the past 20 years; deaths have also decreased.
鈥淎ll diseases are still problems, but many are no longer devastating,鈥� Bohjanen says. 鈥淲e are so interwoven into global health that it鈥檚 hard to imagine international research not being there.鈥�
In his many trips to Uganda, Bohjanen has lived in the country for up to a year at a time. The slower pace of life and the importance placed on relationships over possessions is 鈥渋mpressive鈥� and a valuable part of the experience, he says.
Two of Birbeck鈥檚 NIH-funded studies examine the use of aggressive antipyretic therapy for fever control and the neuroprotective and/or side effects of the therapy. In addition to malaria deaths, more than a third of pediatric cerebral-malaria sufferers鈥攁bout 200,000 children each year鈥攅nd up with neurological disabilities. Her findings are key to reducing the effects of the disease and the accompanying disability for sufferers in malaria-endemic regions, but also has implications around the world.
In 2023, nine people living in the US were diagnosed with malaria even though they had not traveled to a country where the disease is endemic. These cases are not cause for panic, doctors say, but they show that even diseases once eradicated can return.
Global warming contributes to malaria incidence because the mosquito鈥檚 capacity to transmit malaria is temperature dependent. In other words, things change, and we aren鈥檛 finished learning about or dealing with problems like malaria here in the United States.
It Takes a Village to Get Supplies
There are challenges to conducting international research, particularly supply chain issues for medical necessities and for even basic necessities such as water. Nevertheless, Birbeck finds the community support 鈥渞efreshing鈥� and the doctor-patient relationship stronger.
鈥淭here are challenges everywhere, but the Zambian people are willing to try to make things work,鈥� she says. 鈥淭hey don鈥檛 see anything as hopeless.鈥�
During the COVID pandemic, in a clinical trial being conducted in Zambia and neighboring Malawi, transporting supplies became difficult when Malawi shut down. But people found a way. Supplies were flown to the Zambian capital and transferred overland to the border. A minibus driver retrieved the supplies and passed them on to his gardener, who dropped them off with his brother, who then delivered the supplies to the hospital in Malawi. It took five days, but no supplies were lost.
鈥淧eople are resilient and resourceful, so the study was able to continue uninterrupted,鈥� she says.
Thirty years ago, Birbeck was the only neurologist in all of Zambia. Now there are 10 local neurologists and a number of residents. During a recent visit by the NIH, the team made 47 presentations, almost all of them by Zambian professionals. Birbeck doesn鈥檛 take credit for the evolution but is happy to see it.
Birbeck plans to retire in Zambia. She owns property and pets in the capital city of Lukasa and in Rochester. When she鈥檚 in Zambia for six months of the year, she misses her 麻豆视频colleagues. She also misses beefsteak tomatoes, sweet corn, the Rochester foodie scene, and The Little Theatre. When she鈥檚 in Rochester, she misses her Zambian friends and 鈥渁vocados the size of footballs.鈥�
