Editor’s note: ACR on Air, the official podcast of the ACR, dives into topics important to the rheumatology community, such as the latest research, solutions for practice management issues, legislative policies, patient care and more. Twice a month, host Jonathan Hausmann, MD, a pediatric and adult rheumatologist in Boston, interviews healthcare professionals and clinicians on the rheumatology front lines. In a series for The Rheumatologist, we provide highlights from these relevant conversations. Listen to the podcast online, or download and subscribe to ACR on Air wherever you get your podcasts. Here we highlight episode 71, “The Rheumatology Access Expansion Initiative,” which aired on Feb. 27, 2024.
Rheumatology is no stranger to specialist shortages. Leaders in the field have attempted to address the rheumatologist shortage by increasing the number of fellowship spots, working with advanced practice providers, improving telemedicine access and other measures, Dr. Hausmann says.
Still, the workforce shortage remains, leaving parts of the U.S. without adequate support from rheumatology. To address this situation’s effect the Navajo Nation, which spans parts of Arizona, New Mexico and Utah, two rheumatologists created the Rheumatology Access Expansion Initiative, which is designed to help primary care providers care for their patients with rheumatoid arthritis (RA).
Dr. Mandal
Jennifer Mandal, MD, an assistant professor of medicine in the division of rheumatology at the University of California, San Francisco, and Wendy Grant, MD, a rheumatologist at CommonSpirit Rheumatology in Durango, Colo., began the program because of the shortage of rheumatologists and the higher prevalence of RA among those living on the Navajo Nation reservation. The prevalence is 4–5% compared with 1% in many other parts of the U.S.1
“There are these huge areas of the country where there is just an incredibly dire need for rheumatologists,” Dr. Mandal says. “I started to realize that the people who are actually providing the rheumatology care in these areas are primary care providers. They are dealing with incredibly complex rheumatologic conditions, often with very minimal support.”
With a background in medical education and curriculum development, Dr. Mandal began to consider educational initiatives to help reach patients. Around that same time, she met Dr. Grant and learned more about the situation on Navajo Nation.
Before her rheumatology fellowship, Dr. Grant’s background included working at a hospital on the Navajo Nation reservation. She was working in general internal medicine, and a rheumatologist would come in every two months to see many patients. She herself ended up seeing many patients with RA, as well as those with lupus, scleroderma and vasculitis. That’s when she decided to get more training in rheumatology.
The Training
To help address the needs of rheumatology patients on Navajo Nation, Dr. Mandal and Dr. Grant decided to use the Project ECHO model, which was developed at the University of New Mexico in 2003.2 It’s based on the concept that a small group of specialists can work together to train primary care providers in underserved areas.
The first ECHO program was related to hepatitis treatment, and there are now ECHO programs around the globe for a variety of health conditions. However, few are for rheumatology. Dr. Mandal and Dr. Grant decided to focus their ECHO project on RA instead of multiple conditions because of its prevalence within rheumatology and among the Navajo community.
The ECHO model includes weekly or biweekly webinars, evidence-based guidelines and case-based discussions with de-identified information. The RA training has taken place once a week over 12 weeks at lunchtime, and CME credits are available.
“RA also lends itself well to the week-by-week training of the ECHO model in the sense that it has well-established guidelines for treatment,” Dr. Mandal says.
They created a 12-week curriculum to provide the foundations of RA, extraarticular manifestations of RA, mimics of RA and early treatment steps. The training also covers when to reach out for help from a rheumatologist vs. when the primary care providers can manage something on their own.
Because the sessions take place virtually, Dr. Mandal says she will share analogies of how something may feel during a joint exam, such as a joint with synovitis feeling like a ripe grape. Dr. Mandal and Dr. Grant also recorded some of their joint exams to share with participants.
Support
Dr. Grant
A group called Healthy Native Communities Partnership, based on Navajo Nation, has partnered with the initiative to look at all materials from logistical, cultural and linguistic-specific factors. Also, an in-person event was held with community health representatives who travel around the reservation and visit people with chronic disease, including those with RA, Dr. Grant says.
One issue that arises with this type of program is defensiveness among some specialists. Some may reflect on their specialized training and niche knowledge, and wonder how they could teach it to someone not going through an actual fellowship.
“I think it’s important to be thoughtful about the way we structure this program and what we’re teaching and making sure it’s safe and approachable. But the other piece is primary care doctors all over the country and the world are treating complex rheumatologic disease already,” Dr. Mandal says. “They can either do it with little or no help from rheumatologists, or they can do it with our help and collaboration.”
Tracking the Results
The program began in 2021 with 16 providers. So far, the initiative has had five cohorts of providers from across the Navajo Nation.
Much of the initial recruitment was based on word-of-mouth and through connections from Dr. Grant. There was a good amount of tracking down the right people through phone and email to let them know about the initiative and ask for help spreading the word.
“The level of dedication from the participants is really exciting,” Dr. Mandal says. “They’re not being paid to do this. … They’re truly doing this out of the goodness of their hearts and a deep desire to better serve their patients.”
To help assess how the information has helped, participants take a pre-training and a post-training test, as well as test a year later. The questions asked include self-reported confidence in diagnosing and managing RA, such as confidence in starting methotrexate without guidance from a rheumatologist and confidence in performing a joint exam. Other questions include how often participants are using an RA disease activity score, such as RAPID3, and how often they are looking at vaccine records for patients who are on immunosuppression medications.
What the initiative is not tracking yet is patient data. The main reason for this choice the previous exploitation of members of the Navajo community by the Western medical system. This history has resulted to a hesitation within the community to participate in research. Instead, initiative leaders have focused on establishing trust and a long track record with patients on Navajo Nation.
“Eventually, collecting … patient outcome data would clearly be important,” Dr. Mandal says.
The Future & Funding
In the future, Dr. Mandal and Dr. Grant would like to host a one-day event open to participants to cover critical in-person skills, such as the in-person patient exam.
Other projects in the works include creating patient education materials for the Navajo community, training more community health representatives and thinking about other ECHO projects, including one for spondylarthritis.
Funding for the program for the first three years came from the BMS Foundation. With that grant ending soon, they are looking for additional funding.
Editor’s note: A new resource for primary care physicians interested in learning more about rheumatology is available from the ACR. And Workforce Expansion Grants for fellows pursuing rheumatology are available from the Rheumatology Research Foundation.
Vanessa Caceres is a medical writer in Bradenton, Fla.
References
- Mandal J, Nasrallah C, Carroway T, et al. Perceived barriers and opportunities to accessing rheumatoid arthritis care on Navajo Nation: The primary care providers’ perspectives [abstract 1098]. Arthritis Rheumatol. 2022 Oct;74(suppl 9).
- Project ECHO. University of New Mexico. 2024.
