Dr. Shivani Garg develops HCQ-Safe, an innovative tool for shared decision-making in lupus care

Shivani Garg, MD, PhD, associate professor, Rheumatology, is the principal investigator and lead developer of a new tool that’s changing how rheumatology providers talk with lupus patients about whether to stop, start, or continue using hydroxychloroquine (HCQ), a cornerstone treatment of the disease.

The tool, HCQ-Safe, available for free online and in print, is one of the recent outshoots of ongoing work by Dr. Garg, who is the founding director and medical director of the UW Health Lupus and Lupus Nephritis Clinics. It uses simple visuals to explain HCQ’s proven benefits and rare harms.

“Basically,” Dr. Garg says, “HCQ-Safe summarizes published data into a pictorial representation of what can happen with the medicine versus what can happen without it.”

In the video below, she explains how the tool can aid patients and providers.

Defining the problem

HCQ has long been a cornerstone treatment for lupus, helping reduce the risk of organ damage, blood clots, and even early death. 

Despite these benefits, up to 83% of patients stop taking it within the first year—often due to fears about the side effects (most notably, a low chance of irreversible eye toxicity) or due to a simple lack of information about the benefits and harms.

“A patient once told me they never knew that hydroxychloroquine could prolong survival,” Dr. Garg recalls. “If they’d known, they would have made different decisions about medicine. So that's where the concept of shared decision-making surfaced. Every person can make an informed decision about what to do and feel supported in that decision.”

HCQ-Safe summarizes published data into a pictorial representation of what can happen with the medicine versus what can happen without it.

Dr. Garg

Testing the tool

HCQ-Safe was launched in 2024, after a year of development—with help from the University of Wisconsin Department of Information Technology (DoIT)—and another year of testing across 200 patient visits involving rheumatologists, advanced practice providers (APPs), pharmacists, nurses and learners. 

“During testing, we saw an impressive 37% improvement in decisional conflict scale scores after patients reviewed HCQ-Safe in a clinical setting,” says Dr. Garg. 

In other words: HCQ-Safe helped patients feel more comfortable—less conflicted—about their decision to use the medication.

Even more impressive: among patients with historically low refill rates, adherence increased by 47% within six months of using the tool, which contributed to a remarkable three-point reduction in lupus disease activity overall. 

Moreover, clinicians only needed to spend five minutes reviewing HCQ-Safe with patients for an impact to be seen; and the impact was significant whether the discussions were led by rheumatologists or by other clinical staff, such as a nurse or a pharmacist. 

“These data can reduce physician’s workload and support feasibility of using HCQ-Safe as a standard of care during lupus visits,” notes Dr. Garg.

“We’re hoping that this will all result in better disease control and long-term outcomes across different lupus populations—particularly when we combine it with things like precision monitoring and optimal HCQ dosing per individual patient risk factors. And that’s what we’re looking at in the next phase of analysis.”

Championing distribution

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Since launch, HCQ-Safe has been presented at major rheumatology conferences, including those of the American College of Rheumatology (ACR) and the European Union League Against Rheumatism (EULAR). Dr. Garg has also been invited for an oral talk at the European Conference on Healthcare Communication.

“The uptake has been promising,” Dr. Garg says. “In less than four months the HCQ-Safe website has logged over 1,500 engaged sessions globally, with visitors actively reviewing both benefit and harms sections.”

The tool is also featured in the ACR’s recently released Systemic Lupus Erythmatosus (SLE) Quality Measures Implementation Guide and SLE self-efficacy initiative. Dr. Garg is working with the Lupus Foundation of America and other advocacy organizations to expand distribution, and with electronic health record (EHR) systems to add HCQ-Safe directly into EHR software. 

Our goal is to ensure that all patients with lupus—regardless of literacy or language barriers—have access.

Dr. Garg

Another critical area of expansion is making the tool available in other languages. There are currently English and Spanish-language versions, with a translation in Mandarin forthcoming.

“It’s a free resource,” Dr. Garg emphasizes. “Our goal is to ensure that all patients with lupus—regardless of literacy or language barriers—have access.”