‘Unity among nations’: The rise and promise of global collaborations in rheumatology
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An ironic twist of the COVID-19 pandemic was that as most of the world huddled indoors, opportunities for health care professionals to communicate and collaborate across great distances flourished, particularly in rheumatology.
As a result, according to experts, the stage is now set for international partnerships to help equalize patient care in all corners of the world. But it will take work.
Gwenesta B. Melton, MD, a retired rheumatologist from North Carolina, recently held an international summit at the 2022 Association of Women in Rheumatology (AWIR) Annual Conference that dealt with issues ranging from gender equity in rheumatology care to the use of telemedicine across continents. Representatives from each participating country or region were given 5 minutes with a pre-recorded talk followed by a Q&A.
“We have collaborations with several countries,” Melton told Healio, noting a diversity of participants, from Italy and Pakistan to Canada and the Caribbean.
Although Melton is encouraged by the increasing amount of transcontinental sharing of ideas in AWIR and other such organizations, she stressed that there is considerable work to be done if that communication is to translate into improved patient outcomes.
“We are still just gathering data at this point,” she said. “There is a clear perception that there are inequities based on gender and other factors, but we need more concrete evidence of how they play out.”
That evidence is building.
In a paper published in Pediatric Rheumatology, Beukelman and colleagues surveyed investigators from North America, Europe and Australia about existing trials and studies in juvenile idiopathic arthritis. The final analysis included 11 national and seven multinational data sets representing 37 countries.
“There is a wide range of large, ongoing JIA registries and cohort studies around the world,” they wrote. “Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.”
Further evidence of collaborative efforts are the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry and the COVID-19 Global Rheumatology Alliance. CARRA has become a critical component of individual patient care and guideline development alike, while the COVID-19 registry continues to demonstrate that global collaboration is possible and can answer some of the most difficult questions posing health care professionals today.
For Angela Migowa, MD, a pediatric rheumatologist in the department of pediatrics and child health at Aga Khan University Medical College East Africa (AKUMCEA), in Nairobi, Kenya, if true partnerships across international borders are to develop, they also must be personal.
“I strongly believe that the development of a people of a nation is only sustainable when the people themselves are involved,” she told Healio. “I am in Kenya. I can’t just walk into Uganda and say, ‘This is how we diagnose arthritis — you should do it this way.’”
The first step, according to Migowa, is to go on a fact-finding mission to understand what other experts are doing.
“We want our patients to have access to diagnostics and treatments so they can have a good quality of life, and I know this is the goal of our counterparts in Uganda,” she said. “But we need to understand our colleagues, their priorities, and the challenges they face. Once we do that, we can get them to buy into our vision, or we can come up with a vision together.”
Seeing firsthand how different organizations have worked toward a common vision may shed light on how other such partnerships may develop in the future.
Uneven access
Melton’s AWIR presentation, and what she hoped to accomplish with the program, started with telecommunications, the newest tool in the rheumatology armamentarium.
“A virtual platform was the easiest way for our colleagues overseas to participate and share what they are doing,” she said.
In one example, a collaboration with AWIR in Italy focused on reproductive health among women. “They are also looking at gender differences in disease manifestations and the care that women receive compared to men,” Melton said.
The hope was that the information gathered by colleagues in Italy could provide a playbook for countries that face similar challenges in terms of gender equity in care.
In Pakistan, a global chapter of AWIR uses the platform and the technology to elevate the voices of women practitioners.
“There are fewer opportunities for women-led organizations in Pakistan,” Melton said.
She noted that Pakistan has done “a beautiful job” of improving access to care for patients. “Dr. Nighat Ahmed, who trained at the Cleveland Clinic, went back to Pakistan to foster and empower women fellows,” Melton said. “Her group started an organization that is the equivalent of the Arthritis Foundation in the United States. They have made significant improvements in terms of access to care.”
Gender differences in disease management can also be found in England, according to Melton. She noted that their counterparts in the United Kingdom shared data on gender equity.
Another group of AWIR global partners who presented at the summit hailed from the Caribbean, where many countries face issues relating to care access.
In the Caribbean region, because there are different guidelines and recommendations from one country to the next — even between countries that are relatively close to one another — medication approvals and other regulatory considerations can be confusing.
“They can fall under U.S. or European Union recommendations, depending on the country,” Melton said.
Experts from the Caribbean shared information on how to deal with these hurdles that could be beneficial to other regions with similar obstacles.
Meanwhile, the representative from AWIR Canada, pediatric rheumatologist Nicole Johnson, MD, of Alberta Children’s Hospital, in Calgary, used her platform primarily to discuss issues facing children and adolescent patients. She also included information about resolving issues surrounding diversity and inclusion in Canada, which may be useful for practitioners in other countries that have similarly diverse populations.
Finally, representatives from AWIR Brazil provided information on gender equity issues facing rheumatologists and patients in that country.
According to Melton, these perspectives can and should help develop specific action plans to improve access to care and quality of life for patients around the world.
“We have seen great advances in biologic medications in the 21st century, but they do not mean a thing if patients do not have access to them,” she said.
She and the leadership at AWIR hoped to raise awareness that there are marginalized populations around the world that need access and care.
There may be no region more in need of such intervention than the countries represented by Migowa in her role with the Pediatric Society of the African League Against Rheumatism (PAFLAR).
‘Never a thought to call a rheumatologist’
In a paper published in Pediatric Rheumatology, Migowa and colleagues described the necessity, aims and achievements of PAFLAR.
“When it comes to the challenges that we face in our region, I would group them into patient-centered challenges and provider-centered challenges,” she said.
Perhaps the biggest challenge faced by rheumatology patients in the pan-African region is stigma, according to Migowa.
“We see this a lot in our children who have arthritis conditions,” she said. “I have had people tell me that they would rather their child have HIV than arthritis.”
The main impact of this stigma is that the parents of children with arthritis often do not seek care, which leads to unchecked and untreated disease.
“The damage to these children becomes so great that you cannot reverse it,” Migowa said.
Although support groups for parents of children with arthritis are beginning to proliferate, Migowa stressed that the stigma remains a “huge stumbling block” for clinical care.
“If the patient feels they will be ostracized by their community, even if patients have access to diagnostics and therapeutics, they will not use them,” she said.
Another issue is that malaria, tuberculosis and malnutrition continue to plague many populations.
“These other medical conditions are killing children,” Migowa said. “There is still much work to do before we can deal with arthritis.”
As such, many individual providers and regulatory agencies do not feel that childhood arthritis is a serious enough concern or worthy of their attention, according to Migowa. “Many more physicians will log into a malaria webinar than an arthritis webinar,” she said.
These individual attitudes play out in the research arena.
“The quest for knowledge in this area is not as serious, and so many children are misdiagnosed,” Migowa said.
This can have impacts on researchers studying the epidemiology of certain diseases, she added.
“For example, many clinicians are simply not aware of what childhood lupus looks like,” Migowa said, noting that children are diagnosed with infections or other diseases.
This, in turn, impacts treatment regimens.
“Many clinicians will end up giving antibiotics for a fever that is not a bacterial infection,” she said. “There is never a thought to call a rheumatologist.”
However, as telemedicine becomes the norm, the likelihood of calling a rheumatologist — or for rheumatologists across international borders to call one another — may increase.
‘Unity among nations’
Like many other experts, Migowa views the increased use of telemedicine in rheumatology as perhaps the most significant silver lining of the COVID-19 pandemic.
“We have maximized digital platforms in ways that we have never done before,” she said.
In the African League of Associations for Rheumatology (AFLAR), experts in Kenya are now regularly in contact with their counterparts in Egypt, Mali, Nigeria, Senegal and Tunisia, among other countries.
“It has fostered unity among the nations,” Migowa said.
Although the needs in each of these countries can be vastly different, sharing stories, experiences and solutions has opened the eyes of rheumatology professionals across the region.
“What is powerful is that you can show people that you value what they bring to the table in terms of their knowledge and expertise,” Migowa said.
This mutual respect leads to communication, which then leads to collaboration.
“We have also been able to network with practitioners in Europe, Asia and North and South America,” Migowa said. “This was not possible in the past because we took a blind eye to the needs in other regions.”
Although Melton is also encouraged by the increasing use of telemedicine, she believes that there is still work to be done.
“For countries that have good broadband access, or those with individuals who can access a smartphone, tablet or laptop, telemedicine was absolutely life-changing,” she said. “But there are many countries out there without adequate internet or broadband capacity. For those people, telemedicine is just a word.”
Unfortunately, Melton believes that providing access to such technology is beyond the scope of individual practicing rheumatologists, and even beyond the scope of organizations like AWIR.
“This is something that will have to be taken up by people like Bill Gates and other similar foundations,” she said. “It will take huge amounts of philanthropy from very rich people and considerable efforts in terms of infrastructure.”
Meanwhile, physical travel remains complicated, with both COVID-19 and shifting political climates occasionally creating barriers to movement.
“But I have met with experts all over the world that I still have yet to meet face-to-face,” Migowa said.
‘Less respect to a female provider’
When professionals are unable to meet each other face-to-face, miscommunication and suboptimal treatment can occur, particularly in the context of gender and racial issues.
One example is that many rheumatologists still do not recognize how different diseases can present and progress differently in women than men, according to Melton.
“There is a need for earlier recognition, which can lead to earlier diagnosis and earlier treatment,” she said.
Another issue pertains to patient perceptions about the gender of the physician treating them.
“In some countries around the world, there is the perception that a woman provider is not as good as a male provider,” Melton said. “They will give less respect to a female physician, which can obviously impact outcomes.”
Despite these challenges, Melton stressed the importance of having men as partners in the battle for gender equity.
“It has been fascinating that by having men who contribute to the sponsorship, mentorship, advancements, practice and academia, some of our male partners did not realize how their male colleagues have been viewing women colleague,” she said. “But once we get through to them, they understand how differently they were talking to female and male colleagues. It is a process.”
Melton then raised the central question for all practitioners to consider: “Can’t we just look at each other as equals?”
Migowa underscored this point and added that this should translate into viewing all patients as equals.
“We do not want to lose sight of the fact that human life is at the center of everything we do,” she said. “It is beyond me and you. It is about protecting the dignity of all human life.”
References:
Beukelman, T, et al. Pediatr Rheumatol. 2017;doi:10.1186/s12969-017-0161-5.
Migowa, AN, et al. Pediatr Rheumatol. 2021;doi:10.1186/s12969-021-00557-7.
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