Barriers to tele-rheumatology persist despite ‘humongous’ post-pandemic demand
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Telemedicine access and use in rheumatology has fluctuated wildly over the last half decade, from near nonexistence through 2019 to its highwater mark during the emergency phase of the COVID-19 pandemic.
That tide has since rolled back significantly, it seems. Many of the impediments to virtual care platforms that came down during the height of the pandemic are in place yet again, leaving the future of tele-rheumatology uncertain. However, despite this ebb and flow, patient demand for the technology appears as rock-solid as ever. Many of those who first experienced telemedicine during the first waves of the pandemic are still seeking it out — if not outright expecting it — for certain rheumatology appointments.
“Patient demand for telehealth is tremendous,” R. Swamy Venuturupalli, MD, founder of Attune Health in Los Angeles, and rheumatologist at Cedars Sinai Medical Center, told Healio Rheumatology. “Many want to continue to have the option to see their doctor virtually, as they did during lockdowns.”
However, this demand is far from uniform across patient demographics. And, in many cases, it is no longer even possible to provide the same level of telehealth services as seen during the early days of the pandemic to those who want it. The reasons are varied and often intertwined, ranging from problems with insurance reimbursement to uneven broadband internet distribution.
“It is incumbent upon health care systems to partner with the communities they serve to clarify and address barriers to telehealth use,” Grant Hughes, MD, associate professor of rheumatology at the University of Washington School of Medicine and section head at Harborview Medical Center, in Seattle, said in an interview. “Why aren’t people from certain backgrounds enjoying all the benefits of telehealth? Patients, families and communities know the answers to this question, of course. However, health systems do not. This why patient-centered research is essential to addressing telehealth inequities.”
According to Maria Danila, MD, MSc, MSPH, professor of medicine in the division of clinical immunology and rheumatology at the University of Alabama at Birmingham, and physician scientist with the Birmingham Atlanta Geriatrics Research Education and Clinical Center at the Birmingham VA Medical Center, many patients — particularly in rural areas — have low or no access to broadband internet.
“Many of these rural areas are often inhabited by older people, many with lower socioeconomic status,” she told Healio Rheumatology. “Furthermore, people from minority groups are less likely to have access to broadband internet, compared with white individuals. All of these are barriers to telehealth use.”
Meanwhile, provider and structural barriers including insufficient, or difficulties with, technology in practice, as well as questions regarding which visits are suitable and safe for telehealth, and a lack of remuneration, abound in rheumatology, according to Rebecca Grainger, MB, ChB, PhD, associate dean of medical education and rheumatologist at University of Otago, in Wellington, New Zealand.
Meanwhile, although rheumatologists may have the ability to mitigate the patient and provider factors that inhibit telehealth use, they may have less control over structural barriers that govern broadband internet access or insurance reimbursement. As it stands now, rheumatologists are left to employ tech platforms on a case-by-case basis. Improving access may depend on first understanding the obstacles to telehealth in any given patient — including those least likely to opt in.
‘A Lack of Trust’
In a 2022 cross-sectional study published in the Journal of Medical Internet Research, Sun and colleagues assessed factors associated with telehealth uptake before and after the pandemic. Results showed that through 2019, groups that were less likely to activate a MyChart app included men, Black or African American patients, those who marked their race as “other,” patients who used Spanish as their primary language, those in rural areas, those on Medicaid and those with a lower median income.
Meanwhile, barriers to tele-rheumatology both before COVID-19 and after protocols shifted back to pre-quarantine levels followed a similar pattern, with factors including Black, African American, or “other” race, Spanish language preference, rural residence, no or Medicaid insurance, and male gender, according to the researchers.
This intersecting group of factors tracks with the experiences of Danila and her colleague Lesley E. Jackson, MD, assistant professor in the division of clinical immunology and rheumatology at the University of Alabama at Birmingham.
“Digital literacy is often age dependent, but it is also race and language dependent, as well,” Jackson said. “These factors are connected.”
Although Hughes acknowledged that many rheumatologists would be cognizant of, or sympathetic to, these barriers, unconscious bias may be common.
“Health care providers themselves may be fueling disparities, as some studies show that Black or Hispanic patients are less likely to receive information about telehealth and its benefits from doctors, nurses and clinic staff,” he said.
Even among Black, Hispanic or other underrepresented groups that receive appropriate information from their providers, other barriers exist.
In a 2022 paper published in Current Opinions in Rheumatology, Danila and Jackson examined the intersections between race, economic status and tele-rheumatology by reviewing the literature published in the prior 2 years on health care disparities in the use of telemedicine within the field.
“Telemedicine services are disproportionately underutilized by racial and ethnic minority groups and among patients with lower socioeconomic status,” they wrote.
According to Jackson, the pair observed that certain groups — including Black and Hispanic or Latino patients — are less likely to have broadband internet access, and therefore rely on smartphones for their telehealth visits.
“This often forces these patients to drive and park next to a building with free internet and do telehealth visits in their car,” she said.
Danila added these situations can often be problematic for patients who cannot find free public internet, as their mobile plans are rarely sufficient to support the amount of data required for a telemedicine session.
“Not everyone has unlimited data plans,” she said.
This also introduces additional concerns pertaining to patient privacy. Patients who rely on finding a public place to access the internet may not feel comfortable speaking freely — out loud — about their health conditions. This of course also applies to patients without stable housing.
“To have a successful telehealth visit, of course you need a place with stable video and audio connections,” Venuturupalli said. “But you also need a quiet, private space where you can express yourself freely as a patient. This is obviously a challenge for many patients who have unstable or inadequate housing.”
Adequate lighting is also often necessary to show rashes or other physical symptoms, Venuturupalli added.
“As physicians, we need to understand when our patients do not have access to these kinds of spaces,” he said.
Meanwhile, underlying all of these practical and structural barriers to telehealth use is a long history of distrust in the health care system among Black and other marginalized populations.
“There can be a lack of trust in these patient populations and they may prefer in-person visits due to concerns for privacy or fear of perceived incompetence with technology,” Dominique Feterman Jimenez, MD, a senior fellow in rheumatology at the University of Washington School of Medicine, said in an interview. “Reassuring patients at every visit may help increase trust in telehealth.”
As rheumatologists work to understand how all of these factors associated with race and income can be an impediment to telehealth uptake, they must also consider protocols for another group that faces similar challenges — those who do not speak English.
Language Barriers
“The few published studies that center on patient experiences in this regard offer a preview of important barriers,” Hughes said. “A big one is language.”
In a 2022 paper published in ACR Open Rheumatology, Thomason and colleagues assessed sociodemographic disparities in telehealth use among patients in an urban adult rheumatology clinic during the COVID-19 pandemic. They compared data from 3,837 in-person visits among 1,503 patients before the pandemic, vs. 3,406 visits among 1,442 patients during the pandemic. According to the researchers, 41% of the pandemic visits were in-person, while 30% were video calls and 29% were telephone only. A preference for Spanish language visits was associated with a reduced odds of video use (adjusted OR = 0.27; 95% CI, 0.15-0.47), as was a preference for other non-English languages (aOR = 0.34; 95% CI, 0.21-0.55), Black or African American race/ethnicity (aOR = 0.5; 95% CI, 0.35-0.73), Medicaid use and increasing age.
For both video visits and the online patient portal, non-English language preference was the strongest predictor of low use.
“Many non-English speakers have difficulty using telehealth services due to the lack of support of the technology platforms, as well as health care systems in their native language,” Feterman Jimenez said. “To improve use of these tools, system changes need to occur to improve language access.”
Although interpreters, in addition to their usual translation services, can also serve as cultural liaisons, they are not commonly used in a virtual setting. Again, these barriers intersect. In this case, both language- and technology-based hurdles collude to stymie the patient’s ability to participate in telehealth.
“It is difficult enough to provide tech support on the fly,” Danila said. “It is even more difficult to provide tech support that is not in English.”
Another major factor is the use of interpretation or translation services for the after-visit paperwork, according to Feterman Jimenez.
“As an example with Spanish-speaking patients, even if standardized information in the after-visit summary can be automatically translated into Spanish, the provider’s care summary and instructions often are not,” she said. “This can put patients at risk for inappropriate medication use and can limit understanding of their medical condition and steps toward wellness.”
When it comes to these patient-related barriers to telemedicine, race- and language-related determinants of care can often seem like two heads of the same monster. However, if there is a third head of this intersectional beast, it is socioeconomic status.
Socioeconomics Impact ‘All Aspects’ of Care
In a 2022 paper published in Surgical Endoscopy, Zhu and colleagues investigated the impact of socioeconomic status on telemedicine use during the pandemic. The multivariate analysis demonstrated a linear trend between decreasing socioeconomic status and decreasing odds of telemedicine use for elective surgery visits (P = .07).
“People with lower access to physical or social capital resources likely experience higher barriers to all care and this is likely to equally be true for telehealth,” Grainger said. “On balance, the more social and actual capital a person has, the more choices they likely have about how they manage their lives. So, it seems likely that people from lower socioeconomic status will experience more barriers in all aspects of accessing health care, including telehealth.”
According to Hughes, the findings from Zhu and colleagues are similar to those reported by his group in the Thomason paper.
“Our results align well with a number of other studies examining sociodemographic disparities in telehealth use in the pre- and post-pandemic eras,” he said. “We and many others have hypothesized that pre-existing disparities in telehealth use were made worse by the pandemic, and that this contributed to worse health outcomes, including death from COVID-19, among certain vulnerable populations.”
Social deprivation may make it less likely for people to have the necessary familiarity with certain digital tools, as well as access to adequate equipment and services like broadband internet, Hughes added.
In short, low socioeconomic status may be associated not only with race, ethnicity, language and housing, but also with technology.
“There may be health literacy issues, lack of support from the health care institutions, and digital literacy issues,” Feterman Jimenez said.
Although individual rheumatologists may not be able to address any lack of support from large health care institutions on their own, they may be able to help patients in other ways. However, providers first must understand — if not wade into — the legal and policy waters surrounding the current use of telehealth.
‘The Rules Were Relaxed’
Ensuring safe and effective digital technology for an entire population would be a tremendous undertaking, and involve participation from players far beyond the health care system.
“The technology barriers are highly variable, and often relate to both the institutional resourcing and prioritization of tele-rheumatology, and the openness and support for change,” Grainger said.
One critical institutional barrier here is at the policy level, according to Venuturupalli.
“There are strict medical legal protections surrounding any doctor visit — whether it is in-person or telehealth — but during the pandemic, due to the public health emergency, the rules were relaxed,” he said. “People were using Zoom, unsecure telephone lines, Facebook messenger and other non-medically licensed apps. Now that the pandemic is over, we have to balance the ease of use and the legal protections before we can reach the peak we reached during COVID.”
Many rheumatologists do not have the time or mental bandwidth to wade into these legal waters. For those professionals, thinking outside the clinic can help with both tech and housing issues.
“We need to make sure there are hubs in the community, like libraries or other public buildings, where patients can access the internet and have a private space to talk to their doctor,” Jackson said.
According to Feterman Jimenez, if there is an area where newer technologies can play a part more directly, it pertains to the language barriers to telehealth.
“We are in a promising era of technology tools that could minimize language barriers,” she said. “There are currently AI-powered scribes with the capability of listening to the conversation between the provider and their patient in different languages, and then translate it to English, which could either complement the work of human interpreters and cultural liaisons or serve when one is not available.”
However, acquiring these platforms and establishing them so they are up and running is an additional obstacle that overworked rheumatologists — and their staff — may not be able to tackle. Nevertheless, it is incumbent upon rheumatologists to find solutions as the reality of more pervasive telemedicine moves forward.
“It is here to stay,” Venuturupalli said.
Solutions ‘Start With Policy’
Minimizing barriers to telehealth must begin outside of the health care system, according to Jackson.
“It is important to find the root causes of many of these issues, which exist at the health-system level and the institutional level,” she said.
With that in mind, Danila suggested where to begin.
“It starts with policy,” she said. “If you do not have policy that creates infrastructure and provides resources for people to afford broadband internet or smartphone data, it will be difficult to overcome these challenges.”
An ancillary consideration that may ultimately prove useful to tele-rheumatology uptake pertains to outcome metrics. According to Venuturupalli, rheumatologists need to ensure that the outcomes they use in practice can be translated into telehealth settings.
“Without outcome measures that are reliable and validated, we are not going to be able to do real research on whether patients are doing well or not,” he said, adding that there are current technologies that can help in this regard. “One area of research our group is involved in is to create a way for patients to calculate their own tender and swollen joint counts. We created an app-based tool to train patients do to their own physical exam and, compared that to gold standard physician exam within 48 hours.”
Advances like these could accompany augmented reality and remote therapeutic monitoring to provide rheumatologists with thousands of data points in real-time that would minimize the necessity of in-person and virtual visits alike, according to Venuturupalli.
“Tech will get close to replicating our in-person encounters,” he said.
As exciting as these prospects may be, the current reality is that many patients still face difficulties with everyday tech activities, like using their smartphones or accessing the internet.
It is for this reason that a patient-centered approach is critical to move forward, according to Grainger.
“Technological change often focuses on the technology, including the hardware and software products, and overlooks the people and processes that need to be addressed to support the change,” she said. “Organizations need to exist across all those boundaries, with a change management process.”
For Feterman Jimenez, these types of systemic changes must be accompanied by patient education.
“Since practicing rheumatologists may not have control over system changes, focusing on patient education may be a good way for rheumatologists to help increase access to care through telehealth,” she said. “One way in which this could be done is by having bilingual staff — including medical assistants or nurses — to help with the pre- and post-visit needs, such as going over current medication use to verify adherence prior to the visit, and reviewing instructions and medication changes after the visit.”
Another approach could be to schedule extra time to help patients set up and navigate their patient portal, according to Feterman Jimenez.
“Patients will be able to contact their rheumatologist directly once they know how to use it,” she said. “If this is not possible due to time constraints, I encourage a family member — usually someone younger and with more digital literacy — to learn how to use it and teach them or review with them at home.”
In the meantime, the first step in overcoming barriers to telemedicine must involve combined will and effort on the part of policymakers and the entire medical community. For many, it is critical that these efforts succeed.
“Initially, telemedicine was supposed to be a solution to lack of equity in accessing health care,” Danila said. “It has not yet delivered on that promise.”
- References:
- Jackson LE, Danila MI. Curr Opin Rheumatol. 2022;doi:10.1097/BOR.0000000000000869.
- Sun EY, et al. J Med Internet Res. 2022;doi:10.2196/38802.
- Thomason J, et al. ACR Open Rheumatol. 2022;doi:10.1002/acr2.11407.
- Venuturupalli S, et al. ACR Open Rheumatol. 2024;doi:10.1002/acr2.11660.
- Zhu J, et al. Surg Endosc. 2022;doi:10.1007/s00464-022-09186-x.
- For more information:
- Maria Danila, MD, and Lesley E. Jackson, MD, can be reached at 1720 University Blvd., Birmingham, AL 35294; email: lejackson@uabmc.edu; mdanila@uabmc.edu; ptaylor@uabmc.edu.
- Rebecca Grainger, MB, ChB, PhD, can be reached at PO Box 7343, Newtown, Wellington 6242, New Zealand; email: rebecca.grainger@otago.ac.nz.
- Grant Hughes, MD, and Dominique Feterman Jimenez, MD, can be reached at 1959 NE Pacific St., Seattle, WA 98195; email: ghughes@medicine.washington.edu; feterman@uw.edu; sghanson@uw.edu.
- R. Swamy Venuturupalli, MD, can be reached at 8750 Wilshire Blvd. #350, Beverly Hills, CA 90211; email: drswamy@attunehealth.com.
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