How Telemedicine is Integrating into ALS Multidisciplinary Care

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Did you know we have been using telemedicine since the 1960s? Neil Armstrong and his fellow astronauts wore medical monitoring devices developed by NASA during their first moon landing in 1969. Since then, the use of telemedicine has exploded. Over half of all U.S. hospitals now use some form of telemedicine through more than 200 telemedicine networks.

According to the American Telemedicine Association, telemedicine is the remote delivery of health care services and clinical information using telecommunication technology. Millions of people use telemedicine to stay out of emergency rooms and hospitals, and instead, receive medical services at home. Telemedicine is also a great way to bring medical services to rural areas.

As the health of people living with ALS declines over time, telemedicine could be integral in reducing barriers to treatment and improving overall care. With that in mind, integrating telemedicine into multidisciplinary ALS care is beginning to emerge, but few reports evaluate its technical and medical feasibility.

Today, we speak with Dr. James Berry from Massachusetts General Hospital (MGH) in Boston. He recently published a paper in the Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration journal, outlining how they integrate telehealth into ALS care through their ALS Clinic Telemedicine for People with ALS (TelePALS) Initiative.

The ALS Association funded this important research project through our TREAT ALS Global Research Program.

Thank you, Dr. Berry, for joining us today. Please briefly describe the TelePALS initiative and how it came about.

The idea for TelePALS was born out of a partnership between people with ALS and the care providers at our clinic. Together, we recognized that travel to the clinic was a substantial barrier to care. We also saw new technology for doing medical-grade video televisits developing that might allow us to break down this barrier.

So TelePALS was an ALS telemedicine program with a heavy emphasis on video televisits. MGH was already a leader in using video televisits between physicians at community hospitals and stroke physicians at MGH. The TelePALS paradigm was different, as we aimed to use video televisits to connect our ALS team to patients in their homes.

TelePALS also laid out our plans to use our website to create a closer clinic community, in part by establishing the MGH ALS Link, a clinic email list that people with ALS can sign up for on our website. We use this mechanism to keep people with ALS apprised of new developments in ALS, new trials, and ALS-related announcements.

Finally, TelePALS establishes closer collaborations between home care providers and our clinic providers using webinars, videos, and in-person meetings.

How did The ALS Association help support your initiative?

TelePALS would not exist without the contributions from The ALS Association donors.

When we started the program, we ran into one hurdle after another. Medical insurance wouldn't pay for video televisits. Medical licensing was required in the state where the patient was located during a video call. If a patient lived across a state line, it was viewed as illegal to provide video care unless the provider was licensed in that state.

The technology was difficult to use; the software was buggy and its architecture Byzantine, requiring multiple log-ins and secret passcodes to initiate a visit. People often had slow internet connections at home.

Also, there was a general hesitancy about video televisits on the part of many physicians.

The early part of the grant period was spent overcoming these hurdles. It was during those early years of program building that we really thought deeply about how to best use televisits and experimented with different designs.

So, while it was slow going, we became steeped in the concept of video televisits. And, once we gained momentum, the program took off. We did over 300 televisits last year in our ALS clinic alone.

How can telemedicine positively impact people living with ALS and their families?

Now we view video televisits as an important tool in our multidisciplinary care toolbox. The last thing we do in any patient visit is talk about scheduling the next visit. Now, we tend to talk with people with ALS, caregivers, and providers about whether the next visit will be in-person or by video.

Certainly, televisits are different than clinic visits. Sometimes a clinic visit makes more sense. Yet video televisits are easier in many regards, require far less time and strain for people with ALS, often lead to more time spent talking than examining, and generally make it easier for families and caregivers to join the visit. For deep discussions, video televisit can be a better forum than a clinic visit.

Of course, video televisits are only one part of telemedicine. Web-based educational materials, clinic webinars, digital monitoring of function, and even incorporating remote research are all parts of telemedicine that may allow us to provide excellent care beyond the walls of the ALS clinic.

What does the future of TelePALS look like?

In many ways, the three-page grant proposal we wrote for the TelePALS program in 2012 has turned out to be a 10-year roadmap to building an ALS Telemedicine Program.

Every month, we expand our use and understanding of video televisits for clinical care. I anticipate video televisits being a routine part of care at our ALS center and others within the next five years.

One hurdle that remains: Insurance companies are only slowly coming around to supporting video televisits. Much of the work remains unreimbursed. We’re working on cost analyses to demonstrate the huge cost savings of video televisits, which we hope will drive home the point to institutions and payers that these visits should be reimbursed like clinic visits.

We’re also very focused on using telemedicine techniques, like web-based information and smartphone apps, to move care beyond our clinic walls and better integrate it into people’s lives. Well-designed, informative videos can improve exercise and stretching regimens, explain medications like Radicava, and present information about medical devices like BiPAP and feeding tubes.

And in the future, remote monitoring may provide more real-time information about a person’s safety and function to the multidisciplinary care team.

We want to pull clinical research into the telemedicine mix, too. We’re working on mechanisms to monitor function using just a mobile phone and incorporating these efforts into ALS treatment trials.

Dr. Sabrina Paganoni has designed a trial examining the effect of inosine on disease progression and incorporated such a cell phone outcome measure. Also, Dr. Anne-Marie Wills has used an app-based nutrition program to help people with ALS maintain weight.

Finally, because so many ALS providers across the country are working on telemedicine and digital health projects, we have launched a “Technology in ALS” committee through the Northeast ALS Consortium (NEALS), aimed at fostering multicenter collaborations in telemedicine, digital health monitoring, and assistive technology to speed discovery and adoption.

Paper Citation
Experience with telemedicine in a multidisciplinary ALS clinic.
Van De Rijn M, Paganoni S, Levine-Weinberg M, Campbell K, Swartz Ellrodt A, Estrada J, Cohen AB, Schwamm LH, Berry JD. Amyotroph Lateral Scler Frontotemporal Degener. 2018 Feb;19(1-2):143-148. doi: 10.1080/21678421.2017.1392577. Epub 2017 Dec 18.

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