From concept to clinic: rheumatologists launch and lead disease-specific medical clinics

Dr. Sara McCoy

Shivani Garg, MD, MSThere are many shared similarities between Sara McCoy, MD (pictured above), assistant professor (CHS), and Shivani Garg, MD (pictured at right), assistant professor (CHS). Both joined the Division of Rheumatology after completing their fellowships at other institutions. Both are within their first few years at UW, as Dr. McCoy joined in 2015 and Dr. Garg joined in 2017. Both recognized an unmet need for a specialty clinic designed for patients living with an autoimmune disease. 

And now, both have established new UW Health clinics dedicated entirely to filling this gap. 

Dr. McCoy launched the UW Health Sjögren’s Syndrome Clinic in 2016, and Dr. Garg started the UW Health Lupus Clinic in February 2018. To address renal complications experienced by people with lupus, Dr. Garg also partnered with Tripti Singh, MD, assistant professor (CHS), Nephrology, to establish the UW Health Lupus Nephritis clinic. Each one is the only clinic of its kind in the state of Wisconsin.

Bringing these entities from idea to reality has been a journey for Drs. Garg, McCoy, and Singh, shaping their perspectives as physicians and clinical researchers. It’s also inspiring a systems-oriented view of the health care organization, explained Dr. McCoy. “It takes time and planning from all parts of the organization to address the logistics of starting a new clinic,” she said. 

The effort has been deeply meaningful, according to Dr. Garg. "The whole motive to start this clinic was to understand why patients are feeling the way they are feeling, and figure out what we can do better by helping them deal with their life on a daily basis. Their smiles are the most fulfilling part," she said.

During her fellowship training at the University of Michigan, Dr. McCoy became intrigued with Sjögren’s syndrome (pronounced “show-grin”), a condition that is lesser-known by the general public but that is actually the second-most common autoimmune disease. It affects about 1 percent of the total population and increases to about 6% among older patients. 

“Sjögren’s syndrome is under-recognized and part of the reason that it may not be prioritized is that it’s not a disease with high mortality, but it has a tremendous impact on quality of life, morbidity, and health care costs,” said Dr. McCoy. In Sjögren’s syndrome, the body's immune system attacks its own glands responsible for producing saliva and tears, resulting in severely dry eyes and mouth. 

Timely diagnosis is a persistent problem. “The medical field is very poor at recognizing Sjögren’s syndrome. It typically takes up to 7 years from symptom onset to diagnosis,” said Dr. McCoy. Most health care systems lack the capability to perform and interpret diagnostic lip (minor salivary gland) biopsies. 

The disease also requires a multidisciplinary approach, because it is associated with a variety of multisystem complications including dental issues (increased risk for cavities means it is medically necessary to have dental cleanings every three months), ocular issues due to dryness, and a markedly increased risk of lymphoma, among others. There are no treatments approved by the United States Food and Drug Administration, although there are many approaches available to treat disease symptoms and improve quality of life. 

Even though Sjögren’s syndrome is not generally linked to high mortality, the condition makes life miserable. “Patients are rightfully frustrated when living with this disease because their eyes are too dry to tolerate activities like sitting in a car with the heater running in the winter, or typing on a computer for any length of time,” said Dr. McCoy. 

A common theme among the clinics is creating a program that is tailored specifically to the needs of the patient population. Lupus (systemic lupus erythematosus), for example, primarily affects women who are in the prime years of adulthood, with average age of onset between 20 to 40 years. It is a disease that up-ends careers and family life. It also has higher prevalence in communities of color; according to the Lupus Foundation of America, 1 in 57 Black women are affected. 

Based on her experiences training within a lupus clinic during her fellowship at Emory University as well as her own observations, Dr. Garg realized that the UW Health Lupus Clinic would need a multidisciplinary team including on-call social workers. Medication adherence is a major factor in patient outcomes, so the clinic offers on-call PharmD students to help patients. And there were opportunities to improve time-to-biopsy and time-to-diagnose metrics for lupus nephritis, so partnering with Dr. Singh to establish the lupus nephritis clinic was a natural fit.

That collaboration has been fulfilling for Dr. Singh. "As a nephrologist, it's very advantageous to work side-by-side with rheumatology colleagues to develop a comprehensive plan and discuss it in real time with the patient during their clinical visit. Being able to do this helps increase patients' trust and confidence in me as their care provider,” she said.

Because of the multisystem nature of Sjögren’s syndrome, collaboration with other providers is essential. For the Sjögren’s syndrome clinic, Dr. McCoy prioritized the establishment of an improved diagnostic protocol so that referred patients could be properly diagnosed with sensitivity and speed. She worked with Ricardo Lloyd, MD, PhD, professor, and Rong Hu, MD, PhD, assistant professor (CHS), both of the Department of Pathology and Laboratory Medicine, to establish and refine the lip biopsy protocol used for diagnosis. 

Dr. McCoy has also been developing partnerships with other specialists. She is continuing to seek partnerships in the areas of dental care (particularly since UW-Madison does not have a school of dentistry). To address patients with ocular and pulmonary complications, Dr. McCoy works with Sarah Nehls, MD, associate professor, Neil Barney, MD, professor and Evan Warner, MD, assistant professor, all of Department of Opthalmology and Visual Sciences as well as Nathan Sandbo, MD, associate professor and Amy Malik, MD, clinical assistant professor, both of Allergy, Pulmonary and Critical Care Medicine. 

Launching new specialty clinics has resulted in a rapid learning curve about the business of health care. “I have more patients than I can see, so I have to balance building the reputation of the clinic with my own capacity,” said Dr. McCoy. Similarly, the lupus clinic, which is already operating on a two half-day per week schedule, anticipates increasing volume to a full day plus a half day each week.

For other physicians considering establishing a specialty clinic, Dr. McCoy advises a sense of realistic patience with the process. “It takes a lot of time. From ordering supplies, to designing templates for scheduling, to website design - everything takes far more time than you might initially think. And then when you start the clinic, you are constantly trying to build its reputation.” 

Being forward-thinking is key, explains Dr. Garg. “Envision your 5-year plan for your clinic, and how you can use it for research and patient care.”

There is tremendous satisfaction in guiding clinics from concept to reality. “We’re laying the groundwork for clinical trials, which are deeply needed,” said Dr. Garg. She’s excited about the disease activity scores and quality of life metrics that the clinic is already monitoring, as these will provide a baseline for future clinical research. She and Dr. McCoy are both focused on creating an infrastructure that fosters collaboration and can play a role in helping patients. 

“The earlier we detect and diagnose lupus and the earlier we start therapy, the higher quality of life patients can have,” said Dr. Garg.