Written by Danielle Hartnett

Dr. Alissa Zingman, MD, MPH, has created an innovative practice, P.R.I.S.M., that is a model for care for ALL types of invisible illnesses.

P.R.I.S.M. has become a “must-visit” destination for many patients with connective tissue disorders, particularly Ehlers-Danlos Syndrome, because of the excellent comprehensive care provided.

Physician Outlook Magazine was one of the first national publications to take notice of Dr. Zingman and her practice when she was featured as the “Chronically ch(Ill)“ rockstar that she is. Since then, she has received well-deserved national attention from People Magazine, The Guardian, The Washington Post, and many others. She continues to make strides to reshape the face of medicine as we know it. particularly for patients with chronic, rare “invisible“ illnesses.

“I knew it was coming [COVID-19] and I was able to sort of plan for a little bit, “ Zingman admits, as she breaks down the precautions that her background in Public Health prepared her for. Like all things Alissa seems to do, it was comprehensive and well thought out.

The amount of information that she was able to convey in 40 minutes, information sitting on the top of her head, was organized in thoroughly descriptive chunks that she lists in a verbal outline of care and connections to caring. Information that has been compiled by her and her colleagues, gleaned from specialists, coordinated with physicians and physician adjacent practices, all available to her patients and colleagues through her practice, P.R.I.S.M., a true labor of devotion and need.

Need

That is what lead to the part of our interview that was most enlightening to Alissa’s character. I asked her to tell me something that she wants to get out there to other physicians: to set the tone for what she is dealing with and how they can have a better understanding of themselves in this system.

“My advice to other physicians is to do what you feel called to do. Don’t allow external forces to make you pick a mold to fit yourself into. If you have something that you are passionate about, find a way that you can fill a need doing that. If you are competing for patients, that means that you haven’t found your niche. There are so many unmet needs for patients. None of us should be competing for patients. Find a void that you will derive satisfaction from filling, and do that.“ Dr. Zingman responded.

If you are competing for patients, that means that you haven’t found your niche.

The idea is that physicians should stop competing for patients and stop the competition for care. It will force the field of medicine to reevaluate itself, which will force the insurance and pharmaceutical companies, forcing them to restructure themselves from the current 20-minute drive-thru setup.

Alissa clarified that physicians don’t have to find something uncommon to specialize in.

Finding an unaddressed part of a common illness and addressing that in a novel way is just as important. “Look at the community that we live in. What are the unmet needs of that community? What of those needs “lights your fire,“ and go do that.“ Zingman states.

“My waitlist is over 4 years long. I have never advertised what I do. I have never taken out an ad. It’s all word of mouth. It’s all based on need.“

Currently, physicians and patients are not in control of healthcare. Practices exist in Rheumatology, Neurology, Internal Medicine, etc. There are no Multiple Sclerosis Practices with a Psychiatrist, Neurologist, and Primary Care specialist specializing in Multiple Sclerosis. But why not? Wouldn’t that make so much more sense?

P.R.I.S.M. is an EDS and Connective Tissue disorder practice that has structured itself around multiple specialists and doctors to treat a primary disorder. It allows the practice to specialize in the patients’ needs. P.R.I.S.M. is unique because it looked at this disease and the needs of its patients and created the practice based on the results of the needs assessment. The main purpose of Dr. Zingman’s practice is to look at the needs and fill the gap between what is needed and what is available.

There are not enough places that are coordinating care, creating plans with patients, and creating a framework for how those patients can gain access to that care. That is what Alissa’s practice is doing. The change is based on the need. A business model that caters to the needs of a particular illness and that is obviously thriving while helping patients.

“I never intended my practice to be over 90% EDS patients.“ Dr. Zingman clarifies.

“I enjoy taking care of dancers and athletes. I would do that again. I don’t plan to spend my entire career focusing on EDS; I never intended to do that. That is just how my schedule filled. The need was there. I also take care of patients with rheumatologic issues, those who have other complex conditions, including those who have had multiple surgeries, as well as those recovering from motor vehicle accidents.“

It was with that admonition that Alissa revealed the most telling statement of our interview: “I want to personally be completely irrelevant in 10 years.“

“What I have created is a training facility. I have trained a large number of individuals. Nobody needs ME. The number of people flying from California, England, Europe, to see me…that is outrageous. First of all, it excludes a tremendous number of people from getting care. Second of all, even if you have resources, that shouldn’t be necessary.

“My hope is that in 10 years, I will have created enough educational materials and raised awareness that I can sit in my pool and relax. “

Dr. Zingman is still trying to figure out what steps are needed to make sure that the type of coordinated, comprehensive care that P.R.I.S.M. provides to those who suffer from hypermobility and other “zebra” conditions becomes broadly available to ALL of the patients that need it.

“I like being a teacher and a doctor. The idea of having more locations and staff doesn’t appeal to me. I am not going to do that.“

Ideally, she would like to develop a training institute that offers continuing medical education and hands-on training to a variety of different medical professionals, or for P.R.I.S.M. to become a consultant group for other practices.

All of her hard work, all of her addressing needs, and her vision and passion have finally found a culmination: The Ehlers-Danlos Syndrome Research Foundation. EDSRF is a 501c3 foundation that is funded by friends and patients sympathetic to the lack of research on the disease.

The foundation has several studies underway. One of the research studies has already been submitted for publication.

“I want to personally be completely irrelevant in 10 years.”

“I think that the reality is, that you don’t even know all the problems in EDS or the most common presenting symptoms. We don’t know how much better they can get. From what I have been told by others who work with EDS patients, patients get a lot better at P.R.I.S.M. than they do at any other facility.“

Dr. Zingman wants to be able to provide data to her patients and colleagues, and the foundation helps to fund the necessary research studies that need to be conducted to document the progress being made at P.R.I.S.M. The EDSRF helps to ensure that scientific principles are being followed through well-designed research studies, and demonstrates to insurance companies and colleagues that the business model, practice, and approach are working in quantifiable ways.

“I am very grateful for my MPH from Hopkins,“ Zingman often mentions the invaluable help that her Public Health background has provided. “Public Health gave me tools I wouldn’t have known I needed. I really think that if more physicians were given the opportunity for a true Public Health Education

background, we wouldn’t have a lot of the problems we are having in our communities, and physicians would have more control over what is going on in medicine. That would be a lot better for the community.“

“I didn’t want any of this. I wanted to work 3 days per week and live a low-key life.“ She knows better than anyone what it is like to live with a chronic illness, and is building a practice that can flourish without her physical presence.

She won’t stop until her goals are reached. She is one of the few people in this world actively trying to make herself expendable, and she seems happy to do so.