Mary Wells is, as her T-shirt proclaims, a “Well Black Woman.” She’s also a 25-year “lupus warrior,’’ and the founder and head of a multi-state support group for women of color who are living with systemic lupus erythematosus (SLE).
The chronic autoimmune disease affects 1.5 million people in the United States – 28,000 of them here in Wisconsin, most of them women of color. Living with lupus requires complex care involving frequent monitoring of the kidneys, eyes, skin and adherence to a drug regime to prevent organ damage and early death. Lupus often strikes women in the prime of life, who are raising children, working and caring for elders, meaning that their own health care can take a back seat. Women of color with lupus have significantly worse outcomes due to gaps and disparities in health care: they are seven times more likely to develop kidney failure from lupus and three times more likely to die young of the disease. One reason, revealed through University of Wisconsin School of Medicine and Public Health research, is that patients living in disadvantaged neighborhoods in Milwaukee were 60 percent less likely to get follow-up lupus visits or labs.
Dr. Christie Bartels, chief of rheumatology in the school’s Department of Medicine, could see the harmful effects of these gaps in care in her own patients. So, when she wanted to make changes to improve care for lupus patients, she turned to Wells, who is known to everyone, and on her license plate, as “MZ. MARY.”
Wells, an ambassador for the Foundation for Black Women’s Wellness, acts as a wise elder to newly diagnosed women, and often has Bartels and other lupus experts as guests at her monthly virtual meetings.
With support from a Wisconsin Partnership Program (WPP) Collaborative Health Sciences grant, Bartels and her research team worked with Wells and her group to gather feedback and test ideas. The health care improvements they have made have helped reduce these disparities in care. Here is an edited discussion with Wells and Bartels about their collaboration:
How did the support group get started?
Mary Wells: The Lupus Support Group for Women of Color was born (in 2014) out of an unspoken need, and it’s been growing ever since. We started off with two or three people and now we’re getting close to 50. We started off with just women in Madison, but now since we do virtual meetings once a month, we’ve started getting women from Milwaukee and Green Bay. As the word has spread, we now have women from West Virginia, Florida, New York, California, and a few that I’m probably not mentioning.
What health challenges is this grant helping you solve?
Christie Bartels: We were looking at how we could help people connect to a rheumatologist to get specialty care, keep them in continuous contact with their specialist and help them stay on their medications and get their labs done. Mary helps us connect with volunteers at different stages of the lupus journey for focus groups, so we can talk to them about barriers and facilitators. Then we brought back some strategies that worked in other chronic diseases to test ideas. Mary and her team were able to tell us, “Yes, that will work. No, that won’t work. Maybe you should also think about doing X, Y or Z.” Sometimes they come up with really simple and yet so brilliant ideas, like, “Could you have a schedule of the clinics that have labs that are open after hours or on the weekends so we can get our labs done?” People sometimes tell me they can’t get off work to go to the lab. Sometimes the solutions are elegant, and sometimes they are so practical, and that’s because they’ve lived with it. When we bring an idea to Mary, it’s like improv comedy. (She) just riffs it up and says, “Yes, and here’s another thing.”
What health care quality improvements have you made?
Christie Bartels: One intervention that came out of the work we did together was to create a Workbench in our electronic health records, that flags people who are overdue for labs or visits. We send out letters and make calls to try to help get people back in the clinic. When we first ran the Workbench we had over 100 patients who were overdue for visits, and now when we run it, it’s usually less than 10, and sometimes as low as three. It helped us create an infrastructure to do outreach and get people re-engaged in care. Sometimes all they needed was just that invitation to come back in.
Mary Wells: That is so helpful, because you never know what is going on with an individual, and it kind of puts them back into the mindset of, “Oh yeah, I might have forgotten an appointment.” That relationship between the rheumatologist and the patient creates much more of a buy-in to get to your appointments, take your medications and do what you need to do to be healthy.
What are some future directions for this work?
Christie Bartels: We now have a new Department of Defense grant where we’re looking at doing eye testing right here in rheumatology, rather than making patients schedule a separate appointment with an ophthalmologist. One of the main drugs used in lupus, hydroxychloroquine, can rarely damage the eyes, so people need to have their visual fields checked once a year. And sometimes you get hung up waiting for an ophthalmology appointment, and the rheumatology clinic won’t fill your prescription because you haven’t had your eye exam.
We have purchased a machine for the eye tests so we can do them right here in the clinic and then send the images to ophthalmology to be read. So, we’re sending the test to the doctor, rather than sending the patient to another doctor. That’s just another example of when Mary likes an idea, and we start thinking of really practical solutions to overcome the barriers. We’re going to run a pilot test in September in four clinics: two UW Health rheumatology clinics, one at Medical College of Wisconsin and one in Atlanta.
Mary Wells: You know, we’re just trying to live life the best we can as (lupus) patients. But having to get an ophthalmology appointment at another location, and then their scheduling is out six months? The beauty of this is we can have the eye exam right here at the same time. That’s the bees’ knees.
Christie Bartels: Our progress on this project has been quite substantial. The efficiencies created have the potential for further scalability in clinic workflows, and we have been successful in addressing several barriers to lab testing and visits impacting care through pre-visit planning and appointment scheduling.
We have also developed new partnerships, obtained additional external funding, and are publishing abstracts and manuscripts to disseminate our results more broadly. We were selected to present an abstract sharing the Workbench at the American College of Rheumatology Convergence annual meeting in October. That is right after we kick off the lupus eye screening study which already has patients and our nurses excited.
Truly, Mary’s collaboration and commitment are vital to the success of this project, and the benefits it will bring to patients with lupus here in Wisconsin and beyond.
Banner image by Media Solutions
