Putting Patients at the Center of Lupus Research and Care

As a young girl, Shivani Garg, MD, PhD, watched as a close family member visited doctor after doctor in search of an accurate diagnosis and treatment for an elusive condition that caused painful symptoms.

“It was an impressionable moment for me as a young child: the realization that we could have helped her feel better earlier by just knowing more,” Garg says.

That experience sparked Garg’s interest in a career in academic medicine and continues to inform her dedication to patient-centered lupus research and care today. “My research has focused on disease prevention, early symptom screening, and prompt diagnosis, as well as making treatments more precise to reduce side effects,” she says. “Those early moments have driven me to always bring patients to the table and consider their perspectives. They are the ones who will have to live with this disease for the rest of their lives, and the more I know my patients, the more effectively I can treat them.”

Garg joined Yale School of Medicine in early 2026 after more than a decade of leadership as the founding director of the lupus and lupus nephritis clinics at the University of Wisconsin-Madison. She is now director of the Yale Lupus Clinical Research Program and co-director of the Lupus Program at Yale School of Medicine.

Because lupus is an autoimmune disease that can affect any organ or system in the body, Garg is working to establish multidisciplinary clinics with dermatology, nephrology, and other specialties. She hopes these clinics will allow patients to see several specialists in a single visit and allow providers to brainstorm together to better help patients with complex conditions. She also plans to integrate research and clinical care under one roof.

“My vision is that what we find in clinical care could generate hypotheses for research, and that findings from research could be quickly given back to the patients, creating a continuum of research and clinical care to enable precise and personalized medicine at the individual patient level,” she says. "Multidisciplinary clinics also allow us to provide the best education for our trainees."

Garg created a shared decision making tool, called HCQ-Safe, which includes essential patient input and was recently added to the American College of Rheumatology’s Lupus Implementation Guide and the Epic electronic health record. The tool shows visual details about the effects of taking or not taking hydroxychloroquine (HCQ), the most common treatment for lupus. This is important, Garg notes, as adherence to oral lupus treatments is currently less than 50% due to a range of factors, including cost, transportation, and risk aversion stemming from concerns for medication toxicity.

“If a person is committed to a medicine for the rest of their life, it can feel like a burden, like the medication is controlling you,” Garg says. “When patients can see visual clues about how their medication protects them, they feel more involved in their care and better understand the benefits and harms, making them more likely to continue their medication.”

As part of her ongoing work to improve care and adherence to therapy, Garg’s human translational research lab is studying how much lupus medication reaches the organ site compared to how much causes toxicity and side effects, which can lead to non-adherence. Moreover, her lab is working to link organ site concentrations with inflammatory signals to enable precise dosing and improve drug or formulation discovery to limit toxicity and maximize efficacy.

“Your metabolism and my metabolism are very different. Your kidney function is different from mine, even if both are normal. So why should we use flat dosing, even though we are two different people?” she says. “Kidney function, metabolism, and age are always changing. We need to factor all of this in so we can identify the right dose at the right time for each individual patient, balancing safety and efficacy at the individual patient level.”

Garg defined the therapeutic range for HCQ blood levels as 750–1150 nanograms per milliliter, which is now incorporated as a reporting threshold by leading national laboratories such as LabCorp and Exagen. Building on this research, her team recently published findings in Arthritis Care and Research showing real-world evidence on the impact of HCQ blood level monitoring over time. This study was among the first to demonstrate an 83% reduction in active lupus or flare risk for patients who maintained HCQ blood levels within the therapeutic range. Overall, her work shows that monitoring HCQ blood levels could be an effective way to personalize HCQ dosing and reduce toxicity and flares.

In addition to studying drug dosing, Garg and her colleagues are examining human samples to identify markers that could help predict future disease or disease flares, a feature of autoimmune conditions. Her lab is building data and biorepositories, which she hopes will be used by investigators from different fields and specialties who bring new ideas or hypotheses.

Outside of her work as a clinician, educator, and researcher, Garg is an artist and a poet. She has published several books of poetry and occasionally exhibits her artwork. For the past few years, she has primarily painted with coffee, using different strengths to create a range of colors and textures. Her artwork is often inspired by her patients or experiences at work.

“My patients, when they are first diagnosed with lupus, can feel hopeless, just as we feel when there is a storm on the sea. By helping our patients through the treatment course, we sail them to a calmer sea,” Garg says, describing her sailboat painting (below). “The calmer sea may still have flares just as the weather can change, but at this present moment, the sea is calm. Our patients can navigate their lives on their own terms.”

Rheumatology, Allergy and Immunology, one of 10 sections in the Yale Department of Internal Medicine, is dedicated to providing care for patients with rheumatic, allergic and immunologic disorders; educating future generations of thought leaders in the field; and researching fundamental questions of autoimmunity and immunology. To learn more, visit Rheumatology, Allergy and Immunology.