Peter Schmidt, PhD, likes to say that he specializes in the intersection between math and medicine. He studied engineering at Harvard as an undergraduate and got his PhD in biomedical engineering at Cornell before eventually becoming chief information officer and vice president for programs with the National Parkinson Foundation (NPF). He's a numbers guy.
In 2011, Dr. Schmidt came across some numbers that he really didn't like. Allison Willis, MD, a movement disorders neurologist at Washington University in St. Louis [now at the University of Pennsylvania], had examined the health records of over 29 million Medicare beneficiaries with Parkinson's disease. She and her colleagues identified 138,000 individuals who were diagnosed with Parkinson's in 2002 and followed their medical charts through 2005. She reported her findings in a 2011 paper in Neurology.
“About 40 percent of people with Parkinson's are managed by a neurologist, meaning that they see a neurologist once a year or more. Twenty percent see a neurologist once or twice, just to confirm their diagnosis. And 40 percent are never seen by a neurologist at all; their care is managed by a general practitioner,” Dr. Schmidt said.
Dr. Willis found that the neurologist-managed patients with Parkinson's disease had a 22 percent reduced risk of death, a 21 percent reduced risk of nursing home care, and a 14 percent reduced risk of hip fracture compared with those managed by a non-specialist physician.
Dr. Schmidt thought you could take that data even further. “I told someone, 'We could design an algorithm that would prove you could give a patient with Parkinson's three days of monitoring with a neurologist who is not a movement disorders specialist, and get really good results, but that you could get the same results with a Parkinson's specialist over the course of a half hour at a follow-up encounter.”
The problem, of course, is that only about 8 percent of Parkinson's patients are seen by movement disorder neurologists, and access to those specialists is unevenly distributed. If you live near an academic medical center, you might be able to see one. If you don't, you probably can't — at least, not without a lot of travel.
“What we should be doing is figure out ways to [improve] our system,” Dr. Schmidt said. “Can we take a system that today is seeing 8 percent of Parkinson's patients, and get that benefit for 16 percent or 20 percent of patients? That's our big challenge.”
A PILOT PROGRAM
That's where Ray Dorsey, MD, MBA, comes in. Formerly the director of the Johns Hopkins Movement Disorders Center, Dr. Dorsey returned in August to the faculty of the University of Rochester Medical Center — where in 2007, collaborating with his colleague Kevin Biglan, MD, he had piloted a telemedicine program for Parkinson's patients in a nursing home. While at Hopkins, Dr. Dorsey had taken the idea of telemedicine for Parkinson's disease one step further, using a $50,000 Verizon Foundation grant to provide free consultations to patients directly in their homes, requiring a computer with high-speed Internet connection.
Drs. Dorsey and Schmidt — and a number of colleagues — put their heads together and came up with a proposal, which was approved in May by the Patient-Centered Outcomes Research Institute (PCORI). They were awarded a $1.7 million grant for the National Parkinson Foundation and Johns Hopkins to deliver telemedicine care to people with Parkinson's disease in their homes. (When Dr. Dorsey returned to Rochester, the grant was transitioned to that institution.)
“For the last six months or so, anyone with Parkinson's disease in five states — California, Maryland, Delaware, New York, and Florida — has been able to see a movement disorders neurologist in their home via telemedicine, one time, for free,” Dr. Dorsey said. So far, the program has provided telemedicine consultations to about 100 patients; Dr. Schmidt said the PCORI grant dollars allow for a total of about 200 patients to be seen, but that NPF hopes to raise money to expand the program to cover more patients.
Telemedicine visits for a person with Parkinson's disease are very similar to in-person visits, Dr. Dorsey said. “Many of these patients are already diagnosed with Parkinson's. So I'll take their history, ask them how long they've had symptoms, what symptoms bother them the most, and what medications they're taking.”
But how do you do a neurologic exam over the computer? “The nice thing about Parkinson's, for the purpose of telemedicine, is that it is predominantly visually assessed,” Dr. Dorsey said. “I'll have patients stand up and walk, do a focused exam, observe for tremors and slowness of movement, and then discuss my impressions.”
Dr. Dorsey recently reviewed data for the last 55 individuals seen through the program and noted that about 70-80 percent of the time, more exercise was recommended; in 60 percent of cases, a current medication was changed; in about 40 percent, a new medication was added; and for about 10 percent, surgery was recommended as an option for consideration.
Mark Matulaitis, who went through years of symptoms and physician visits before finally being diagnosed with Parkinson's in 2011, at the age of 57, started seeing Dr. Dorsey at Hopkins last year. “He was the man who was able to give me the correct dose of medication that was able to help me have better 'on' times,” said Dr. Matulaitis.
A former sales professional now on long-term disability due to his symptoms, Matulaitis lives on Maryland's Eastern Shore and found the two-hour one-way trips to Hopkins fatiguing. “My wife can take me to appointments, but it costs her a day off of work,” he said.
So he became one of Dr. Dorsey's first telemedicine pilot subjects at Hopkins (prior to the PCORI grant). Said Matulaitis: “He has me stand, sit, observe things. We talk candidly about some of the other challenges that I have going on. I went through a period of depression, which I understand is very common, and I experienced a fall. He's encouraged me to exercise. Even though you're not there eyeball to eyeball, in a way I think it's almost better than being in the doctor's office, because you're not as emotional and distracted. My blood pressure goes up when I walk into a medical office! And it feels like the doctor has a little more time to talk about things with you.”
In the pilot study published in JAMA Neurology in March, Dr. Dorsey and his colleague at the University of Rochester, Dr. Biglan, found that more people completed their telemedicine visits than those randomized to in-person visits. “One patient got into a car accident on their way to the clinic; as we know, people with Parkinson's have impairments in driving,” Dr. Dorsey said. “And each telemedicine visit saved the patient an average of three hours of time and 100 miles of travel, door to door.”
There are limitations to the capabilities of telemedicine, which Dr. Dorsey is the first to concede. “The physical examination is not as good. Remote assessment of Parkinson's closely correlates to those done in person, but it's not perfect. I can't physically touch a patient, so I can't assess where they have increased tone, and I can't do the balance testing where you pull a patient back to see how they recover. Subtle findings, like eye findings, are also not as good remotely as in person.”
But there are gains as well. “The patient hasn't spent a lot of energy navigating to an appointment that puts them under stress,” Dr. Dorsey said. “You also get a better sense of the person's social situation: you see the patient in their home, and can learn a lot about their social support, economic status, and resources — tons of information you don't get in the clinic.”
The PCORI-funded study is slated to add several new sites (yet to be determined at press time) across the country, with Dr. Dorsey as principal investigator. The plan, said Dr. Schmidt, is to compare telemedicine patients not with in-clinic patients (as with Dr. Dorsey's pilot), but instead with patients getting no neurologist care.
“The standard of care is not neurologist via telemedicine vs. neurologist, it's neurologist via telemedicine vs. no neurologist,” he said. “We want to compare people who are being managed by a primary care physician with those who are being managed by a Parkinson's specialist via telemedicine.”
Drs. Dorsey, Schmidt and their colleagues also hope to use the project to explore whether telemedicine can be used to expand the capacity of the existing work force of movement disorder neurologists.
In a review of NPF's Parkinson's Outcomes Project, which has been following some 7,000 patients at 20 different clinics since 2009, Dr. Schmidt found that the wider the interval between neurologist visits, the more likely it was that the patient had experienced a severe degradation in symptoms.
“But with a set of simple assessments, we could predict the probability that a patient was going to have a very serious complication,” he said. “For example, a dramatic change in the 'timed up and go' [TUG] test, in which a patient sits down, gets up, walks 3 meters, turns around and goes back to sit down, will also predict a dramatic change in things such as depression and cognition.”
The theory is that allied health professionals, such as speech therapists and physical therapists, could alert neurologists to specific, predictive changes via telemedicine. “Many Parkinson's patients are seen every three or four months,” said Dr. Schmidt. With this sort of “sentinel system,” he suggested, patients without such warning signs might safely be able to have their appointment intervals moved from three to four months, or four to six months. “That opens up the ability to add a few more patients into that panel.”
Dr. Dorsey's primary hope for the study, however, is that it will help drive changes in reimbursement for telemedicine. “Our vision is simply that anyone with Parkinson's, anywhere, can get the care they need. We want to transform the way care is delivered for these patients.”