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Care from a distance

Telehealth is emerging as key way to manage MS and other chronic diseases.

by Maureen Salamon
Tom Lott headshot

Tom Lott, a former civil engineer who has MS, finds that telehealth offers an effective alternative to driving
several hours for a doctor’s appointment.
Photo courtesy of Kay Lott Baker

Visiting the doctor for routine multiple sclerosis care used to be an exhausting, all-day affair for Tom Lott. The 66-year-old Grass Valley, California, resident, diagnosed with MS in his late 20s, had to miss a day of work—and as his disease progressed, ask someone to drive him—to make the 1.5-hour trek each way to Sacramento’s Mercy MS Center for follow-up visits with his neurologist, Dr. John Schafer.

But the advent of telehealth technology in recent years has transformed this ordeal into a five-minute ride for Lott and his driver. His twice-yearly visits with Dr. Schafer are now conducted with Lott at a clinic a few miles from his home and Dr. Schafer nearly 70 miles away. At the clinic, Lott’s medical exams are performed almost exactly as they’ve always been—except now, Dr. Schafer assesses Lott’s movements and abilities, and the two discuss symptoms and medications via a system of cameras on articulating mounts and video monitors, instead of in person.

“I’d rather travel 10 minutes total than three hours,” says Lott, who retired from his civil engineering job about three years ago. “There’s nothing like a hands-on visit, but this is very effective.” For people with mobility issues or who no longer drive, like Lott, telehealth visits can make all the difference in convenience and access to quality care.

An emerging model
Also known as telemedicine, telehealth is emerging as a model for providing care to people living with chronic diseases, including MS. Videoconferencing between clinicians and patients for routine visits is just one of the ways telehealth is being used in treating MS thus far. However, clinicians note that physical, occupational and speech therapies delivered in this manner also are gaining ground, along with mental healthcare.

In existence since the 1950s, telehealth has become increasingly accessible as technology has advanced. About half of all U.S. hospitals now use some form of it, according to the American Telemedicine Association. Beyond real-time video interaction, healthcare providers—who range from radiologists to neurologists to physical therapists—also use it for transmitting digital medical images such as CT scans and X-rays for diagnostic purposes; remote monitoring of patients’ vital signs; and so-called “teletriage,” where health advice is offered by telephone in acute situations.

While research analyzing its clinical impact in MS care is still scant, many MS experts are optimistic that telemedicine will eventually offer greater access to care for people living in rural areas and for those whose diseases make it difficult to travel. Other lingering obstacles, such as the technology’s cost, uneven Internet access across the country, inconsistent insurance coverage for telehealth visits and physician-licensing requirements between states, must be resolved as its use expands.

“We have to get away from the model where patients travel thousands of miles for the convenience of the provider. We need to make it convenient for the patient,” says Dr. Gary Stobbe, medical director of MS Project ECHO (Extension for Community Healthcare Outcomes), a collaboration between the National MS Society and the University of Washington that uses videoconferencing among physicians to broaden MS treatment and management. “This is just one of a number of solutions telehealth can provide that I believe can help improve patient care.”

Telehealth robot

Dr. John Schafer speaks through
this RP-7 telehealth robot at Mercy Hospital of Folsom in California. Dr. Schafer visits patients at other Mercy facilities through telehealth.
Photo courtesy of Dignity Health

Steady expansion in telemedicine use
Dr. Schafer, who is the director of the Mercy MS Center, has witnessed significant growth in telehealth usage by Dignity Health, Mercy’s healthcare system, in just the four years he’s been providing telemedicine to people with MS. About 85 MS follow-up visits have been logged at Mercy via telemedicine since August 2013, he says, with plans to expand to about a dozen each month. (Initial consultations are still done in person.)

“Return visits can very easily be done in a 30-minute telemedicine encounter where we’re actually looking at the patient and communicating quite directly,” explains Dr. Schafer, also medical director of an MS Achievement Center at Mercy, which offers wellness and education programs for people with MS. “The equipment is able to focus on very small areas. For instance, I can actually zoom in on the patient to examine eye movements, watch the patient walk, and assess their speech and cognitive function just as easily as during a live encounter.”

Mercy MS Center has piggybacked on existing telemedicine technology in place at Dignity Health since 2008. Originally intended for stroke care, it now is used in an array of specialties, including cardiology, psychiatry and wound care, at more than 30 hospitals around California.

To comply with HIPAA (Health Insurance Portability and Accountability Act) rules, videoconferencing and other telehealth technologies must be encrypted to protect patient confidentiality. Technology itself isn’t covered under HIPAA rules, according to the Center for Connected Health Policy, but providers are—meaning they need to ensure that whatever mode of telehealth they offer is secure.

Better results?
Amy Thiessen, a physical therapist at Oklahoma Medical Research Foundation’s MS Center of Excellence in Oklahoma City, says she used encrypted Skype-like video software when conducting a recent study among 30 people with MS. The study design randomized the participants to one of two groups: those receiving traditional in-person physical therapy and those receiving telehealth PT from their homes.

Research results haven’t yet been finalized, but Thiessen feels she was able to better design certain exercises for her home-based patients to overcome specific physical challenges they face day in and day out. “I can see what their home looks like and where they’re having trouble,” Thiessen says. “One woman was having trouble getting out of her husband’s car because it’s lower, so we worked on her getting out of different kinds of chairs in her home first. It’s seeing what they have to deal with.”

Robin Steinwand kayaking

Robin Steinwand, who has MS, kayaks near her home in Maine. She recently co-authored a report on telemedicine for the Society’s State Activism Advisory Council, and participated on a 22-member think tank panel convened by the Society last spring on telehealth for MS care. Photo courtesy of Robin Steinwand

Dozens of small studies have analyzed the effectiveness of telemedicine in MS care compared with in-person visits, but larger research efforts are still necessary, says Robin Steinwand, 61, of Maine, who was diagnosed with MS 15 years ago and recently co-authored a report on telemedicine for the Society’s State Activism Advisory Council.

“Most small studies were able to show a positive impact from telehealth, but it hasn’t been documented on a large scale in MS,” Steinwand says.

“We are very interested in understanding the impact telehealth can have reaching underserved populations to improve access to quality MS care, but we need more data to support the notion that telehealth services are equal to or better than in-person visits,” agrees Deborah Hertz, MPH, the Society’s associate vice president of healthcare professional engagement.

Society spearheads telehealth efforts
Steinwand and Hertz both participated on a 22-member think tank panel the Society convened last spring focusing on the potential benefits, challenges and best practices of telehealth for MS care. The Society is now following up with a survey of its Partners in MS Care, a large group of dedicated MS providers across the country, to determine how extensively they’re actually using telemedicine.

“I think telehealth is a wave of the future for improving access to care for all people,” Hertz says. “But we need to understand how this is going to improve health outcomes for people with MS.”

MS Project ECHO strategically plays into the Society’s efforts to investigate telehealth, as well as to support improved patient care, by offering professional education and mentoring for clinicians so they feel more confident managing patients in their own communities. Dr. Stobbe, leading the effort at University of Washington, praises the year-old effort—in which rural primary care physicians and community neurologists present patient case studies to UW experts in MS and a Society representative for weekly discussion and support—as tantamount to “bedside rounds, the classic way of teaching and learning in medicine.”

“By linking via teleconference, the technology allows us to basically sit in a room together, even though we’re a thousand miles apart,” he says. “We’ve had examples of cases where the doctor was getting ready to refer the patient to travel a thousand miles for a consultation, and we were able to help them avoid that.”

Obstacles impede telehealth growth
Obstacles to the growth of telehealth include ambiguous state laws governing where physicians may practice, since a license to practice in one state may not be valid in the state where a patient is receiving telehealth services. Additionally, insurance coverage is still spotty for such services, with just 29 U.S. states and the District of Columbia requiring private insurers to cover telehealth the same as they would in-person services, according to the American Telemedicine Association.

Medicare and Medicaid pay for limited telemedicine only in certain circumstances, such as when these consultations are deemed similar to services already covered, and when they’re provided by a physician. If they’re not, a telehealth visit must be deemed to provide a demonstrable clinical benefit to the patient, according to the Centers for Medicare & Medicaid Services. State Medicaid programs also have widely varying rules regarding telehealth practice and payment.

Scenarios where clinicians are office-based and patients are at home—the focus of the vast majority of existing research on telehealth efficacy in MS, including Thiessen’s—are typically not covered by Medicare or private insurance, according to Steinwand.

‘A win-win’
Though telemedicine is still in its early stages, it’s clear that certain individuals with MS can benefit from the technology’s expansion—most obviously, people in rural areas and those with mobility-limiting disabilities. But even urban patients can have trouble accessing specialized MS care, Steinwand says.

“When people are facing mobility challenges, and also depression and fatigue—as so many individuals with MS are—it can be as hard to get to a building next door as to a city far away,” she adds. “Home-based telehealth enhances patient engagement and self-management. If we can check in with our healthcare provider from a distance, it enables us to do better for ourselves the rest of the time. It’s a win-win for everyone.”

Maureen Salamon is a New Jersey-based freelance writer.
Spring 2016
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