Patient Portals

Technology can help fast-track care for patients with rapidly degenerative diseases.

Photo by Cameron Wittig

It’s called “furniture-walking”—when a person with amyotrophic lateral sclerosis (ALS) starts leaning on chairs and other solid surfaces to move around—and it is one of the indicators of the slippery downhill slope in this rapidly progressing disease. (For the 500 or so Minnesotans with ALS, 80 percent will die within five years of diagnosis. For Yankees first baseman Lou Gehrig it only took two years.)

Learning of someone’s furniture-walking early means getting the next level of care in place before a dangerous fall results in a trip to the emergency room, or worse. “Our patients are fragile,” says Dr. Ezgi Tiryaki, director of the ALS Center of Excellence at Hennepin County Medical Center, “and we don’t want them to fall off the grid.”

But sometimes they do. Sometimes Tiryaki and her team won’t know about a person’s furniture-walking, difficulty swallowing, or difficulty breathing in time for intervention. So Tiryaki is pushing for a revolution in the way we care for those with ALS.

Under the current traditional visit model, people treated at ALS Centers nationally and locally are seen only four times a year. Here in Minnesota, land of 84,000 square miles and only two ALS Centers of Excellence (the other is at the Mayo Clinic), some don’t even make that many visits.

Also, the number of specialists a patient with ALS sees can be confusing, says Tiryaki. At HCMC’s ALS Center, you’ll see as many as nine providers in one visit. “It is interdisciplinary in its greatest sense,” says Tiryaki, herself a neurologist and internist with three additional board certifications. It’s all quite overwhelming: “Imagine going to the doctor’s office and getting to see all these people one by one during a single visit. And imagine how such a long visit may become tiring.” Then imagine if you were at home and having a problem—how would you know whom to call? With a rapidly degenerative disease progressing in highly individualized ways inside your body, how would you know if your problem was even worth calling about? And if you did know whom to call, could you reach them?

Now throw culture into it. “No one wants to be a burden,” Tiryaki says. Those of us raised in Nordic stoicism are particularly prone to keeping our declining health to ourselves, at least until our next visit, which may be weeks away. That’s a long time if you have ALS.

The solution, as Tiryaki and her colleagues have imagined it, is a huge paradigm shift—from a traditional model, which relies on visits to individual practitioners (an easy way to bill insurance, but an expensive one, by the way), to an outcome model that sees ALS care in its totality.

An interdisciplinary team approach is already in place at the 33 ALS Centers for Excellence around the country. Next is the development of individualized online portals that can be accessed anytime by patients and their medical teams. The portal would sync information, education, e-mail messages, surveys, and phone calls. Video conferencing would allow patients to be seen, literally—especially key for those for whom distance is a barrier.

It would be real-time reportage, and real-time response, available at all times. “What we’re trying to develop is the ability to be there when our patients need us,” Tiryaki says, “to keep patients in control, even as they lose their abilities and give up something that is precious to them every day.”

Interestingly enough, estimates show that this paradigm shift might cut costs by 25 percent. Avoidance of one emergency room trip alone saves $3,000 to $300,000, Tiryaki estimates.

The Twin Cities is just the place to start the shift, she says. “Minnesota is one of the model states for innovative care. We think if we can do this in ALS here, we can scale it to all ALS care and to other quickly degenerative diseases, too, like dementia.”

Because it’s not just in ALS care that regular and real-time contact saves and improves lives—it’s also true for other rapidly progressing degenerative diseases, such as Alzheimer’s. This model of care could extend far beyond ALS and could change the way we care for everyone in Minnesota and beyond, particularly as we age.

If HCMC’s leadership approves the plan Tiryaki and her team pitched to the hospital’s director of the Center for Healthcare Innovation in May, the ALS Center of Excellence would be the first in the nation to treat its patients under this model. It won’t be the last, says Tiryaki. “This is the future of health care for chronic progressive disease. And I think it’s going to be awesome.”

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