“ParkinsonNet is a transformative, evidence-based, proven model,” says Todd Sachs, M.D., medical director of operations, Southern California Permanente Medical Group. “To me it was a natural fit. It aligns with the changing landscape of health care in America today.”
In the ParkinsonNet model, patients are cared for by teams that include neurologists and specially trained physical, occupational, and speech and language therapists. Social workers also are connected to the teams, which follow evidence-based protocols developed in the Netherlands. The teams are organized into regional groups, called care communities by the Dutch, and into centers of excellence by Kaiser.
The idea is that by proactively working with the various types of therapists, patients can delay or reduce the number of disease-related hospitalizations, says Sachs. Patients experience a better quality of life, and the program saves health care dollars by preventing hospitalization.
In the Netherlands, ParkinsonNet has resulted in a 55 percent reduction in hip fractures and a 28 percent increase in the number of patients getting physical therapy from 2008 to 2009, according to a study published by the BMJ in March 2014. The model saved 640 euros per patient in 2008 and 381 euros in 2009.
An important tenet of the program is the primacy of the patient. Patient priorities help to drive care decisions in this approach. “As a physician, I would say that often we tend to think we know what’s best for our patients, but that isn’t always the case,” Sachs says. “We should be asking them, ‘What is it that you would like? What are your needs?’ That’s what we’ve done with this program.” By listening to the patient, the team might learn, for example, that a patient’s first priority is to deal with sleep disruptions rather than the shaking in his or her hand.
Kaiser Permanente has established Parkinson’s disease centers of excellence in its Los Angeles, Orange County and South Bay locations with another center slated to open in Woodland Hills. The initial communities were chosen because they have movement-disorder programs already in place. Each location creates a road map of care so that patients are treated in the most appropriate location, be it in the hospital, outside of the hospital or in a gym, Sachs says.
So far, 98 therapists have been trained in the ParkinsonNet model with the help of a Dutch expert hired by Kaiser. Twelve physician champions have been on hand for the training, so they understand what the various types of therapists are capable of, Sachs notes.
Kaiser is tracking several metrics to measure the program’s impact. Early wins are a 135 percent increase in therapy visits and an increase from 30 to 80 percent in the proportion of patients receiving care from a specially trained therapist.
Because the program is just a year old, it’s too early to assess performance on other measures Kaiser is tracking, Sachs says. These metrics include hospital admissions, emergency department and urgent care visits, all fractures, and hip fractures specifically.
Kaiser plans to roll out ParkinsonNet to 10 or 11 Southern California locations by the end of 2015 or early 2016, Sachs says. Eventually, the organization will adopt the model across its entire system, which serves about 19,000 patients with Parkinson’s disease, he says.
To facilitate and encourage direct communication between the patient and his or her care team, Kaiser is developing an online communications platform, Sachs says. Once completed in 2016, the online portal will provide patients with access to trusted information about their disease and also will allow providers to collaborate with and learn from one another.
What’s more, the IT platform will give patients and providers even greater flexibility about where and how to administer care. “The physical therapist could Skype with the patient in their living room, if that’s where they want the care,” Sachs says. “We have to move a little bit away from the traditional model of everything is in a hospital or everything is face-to-face to providing that care where the member wants it, by the right provider.”
Kaiser is still working on aspects of its approach. For example, it's developing a protocol to mobilize the Parkinson’s team when a patient is hospitalized.
The patient is the sun
The Parkinson’s disease program at the University of Florida — one of 26 U.S. centers of excellence designated by the National Parkinson Foundation — also is taking an interdisciplinary approach to keeping Parkinson’s patients out of the hospital.
UF created an urgent walk-in policy for patients with Parkinson’s and other movement disorders with the aim of preventing or resolving problems before they lead to hospitalization. “If you’re a patient with Parkinson’s and you’re having trouble, we want you to walk into the clinic and be seen by somebody,” Okun says. “We try to administer as much of the care as we can in the outpatient setting. When people are hallucinating and having cognitive dysfunction, we can adjust their medications to keep them out of the hospital.” Other centers of excellence around the country are creating similar walk-in policies, he adds.
A National Parkinson Foundation study found that the quality of life for Parkinson’s patients who start exercising early on declines at a significantly lower rate than patients who start exercise later. To encourage patients in their program, UF offers free exercise, dance and singing programs, in addition to more traditional physical therapy, Okun says.
The University of Florida Parkinson’s program is housed in its Center for Movement Disorders and Neurorestoration. The 10,000-sq ft. center sees more than 9,000 Parkinson’s patients and includes clinical services, a gait and balance machine, rehab services, an MRI machine, a swallow suite, laboratory space, a patient database, telemedicine room and dedicated clinical-trials space. Specialists with different areas of expertise work side by side, and often patients see multiple specialists in a single day.
“Our philosophy is the patient — not the physician — is the sun, and we should orbit around the patient,” Okun says.
The interdisciplinary, patient-centered approach is evident in UF’s deep brain stimulation program. DBS is a surgical procedure reserved for patients whose symptoms cannot be adequately controlled with medications. A battery-operated pulse generator — similar to a heart pacemaker — is implanted in a specific part of the brain. It delivers electrical stimulation to block the abnormal nerve signals that cause Parkinson’s physical symptoms.
The University of Florida screens potential DBS patients using a two-day, fast-track process. During that time, candidates see providers in neurology; neurosurgery; neuropsychology; psychiatry; physical, occupational, speech and swallow therapy; and social work. The team members then discuss their individual findings, choose the appropriate targets in that patient’s brain, and decide how to approach the operation.
The team specifically asks patients, “What is going to make it worth it to you to drill a hole or two in your brain?” Okun says. Patients create a list of the disease’s manifestations they want the procedure to fix. The team then explains which items on the list are addressable with DBS, as well as those that aren’t, or which symptoms could get worse.