Kansas ALS Telemedicine Clinic making patient lives easier

May 1, 2018

HTRC’s monthly telehealth bulletin

An innovative ALS telemedicine clinic is making a difference for Kansas patients

“It hits in prime of life,” said Sally Dwyer, director of programs and services for the Mid-America Chapter of The ALS Association. “We have young people with their whole lives ahead of them and people who are looking forward to retirement. It is a punch in the stomach” said Dwyer when describing the devastation of an ALS diagnosis.

The diagnosis signals a difficult journey ahead and can take a psychological toll on patients and families. For the best care, patients will need to see multiple specialists, including neurologists, mental health professionals, respiratory therapists and physical therapists, to name just a few. Shuffling from office to office can be a tremendous burden on families and accessing a neurologist can sometimes mean a day-long journey. But a new ALS clinic in Wichita is helping to relieve some of the burden by bringing coordinated care to the patient, all in one setting.

The Wichita ALS Telemedicine Clinic is a combination of a telehealth visit, and a comprehensive in-person care team. In-person team meetings are followed by a telehealth appointment with Dr. Richard Barohn, a neurologist in Kansas City who has been integral to starting the ALS clinic. For patients and families navigating so many changes, this “one stop shop” is a welcome relief that means less travel time and better care.

Jack Wilson, a Wichita resident who has been battling ALS for more than seven years, put it this way: “Oh boy, what a wonderful ALS clinic visit. I saw the whole team today. They all showed up for just little old me. Even through ice and snow, it was so much easier and quicker than going to Kansas City. I liked how we met with the doctor via [videoconference] and having the whole team present during the interview.”

Not only does the ALS clinic get high marks from patients, it is being hailed by peers as an innovative program. The ALS Mid-America Chapter was recently awarded The ALS Association’s Chapter Innovation Award, which recognizes “trailblazing chapters” that are actively developing and implementing new ideas and delivery strategies, with an emphasis on collaboration.

Collaboration has been a key to the success of the ALS clinic, starting with team meetings before the patient arrives. The team develops an individualized care plan based on each patient’s needs, then orchestrates the clinic visit for each patient that day. If a patient has lost weight due to difficulty swallowing, a common condition for ALS, the dietitian and speech and language pathologist might spend the most time with the patient that day. Following the visits with the in-person care team, the patient meets with Dr. Barohn via video conference, along with the rest of the care team.

While the care team is a benefit for the patient, gathering so many specialists together at the same time also means that if there are any technological malfunctions, a whole team of professionals is thrown off schedule. That, said HTRC Project Director Janine Gracy, is why developing a detailed protocol is a must. Gracy and members of the University of Kansas Center for Telemedicine & Telehealth team worked with the ALS Association to develop policies and procedures. Gracy said it is important to include a back-up plan for communication should the equipment malfunction. The team developed a checklist for preparing and testing equipment prior to each session, helped with equipment selection and continues to provide technical assistance.

Getting the clinic off the ground has not been easy, said Dwyer, but the intense coordination that went into the clinic has paid off. “Our job is to help patients and families cope, maintain functioning and figure out what is next. We believe in quality of life above all and we believe this clinic helps patients to continue their lives to the fullest extent possible.”


Webinar: Telebehavioral health strategies for rural hospitals & clinics
May 17
1-2 p.m. CDT

Join this National Consortium of Telehealth Resource Centers webinar, free of cost, to learn the basic conceptual and regulatory framework for providing telebehavioral in a rural setting. Jonathon Neufeld, Ph.D., of the Great Plains Telehealth Resource & Assistance Center will present several models for integrating telebehavioral health into primary care and hospital services. He will also discuss major points of value and common implementation challenges.

On the third Thursday of the month, the National Consortium of Telehealth Resource Centers presents informative, thought-provoking webinars on timely telehealth topics. Please be sure to check periodically for upcoming webinars at TelehealthResourceCenters.org.

ATA Annual Meeting
April 29 – May 1
Chicago, Ill.
Join healthcare professionals and leaders from an array of healthcare and technology sectors at the American Telemedicine Association to learn, innovate and network. You will return to your organization with actionable insights, long-lasting connections, and an enhanced appreciation of telehealth-and how it transforms healthcare delivery. Be sure to visit the National Consortium of Telehealth Resource Centers’ booth!

ECHO Schedule

Pulmonary Fibrosis May 3-24 Kansas
Healthy Lifestyles Pediatric Obesity Ongoing Kansas
HELP it Might be Autism Ongoing Kansas
Child Behavioral Health Ongoing Kansas
Impact Asthma Starts in May Missouri
Autism Ongoing Missouri
Healthcare Ethics Ongoing Missouri
Chronic Pain Management Ongoing Missouri
Dermatology Ongoing Missouri
Hep C Ongoing Missouri
Child Psych Ongoing Missouri
Community Health Worker Ongoing Missouri
Opioid Use Disorder Ongoing Missouri
Addiction Medicine Ongoing Oklahoma
Obesity Medicine Ongoing Oklahoma
Hepatitis C Starts in May Oklahoma
HIV/Viral Disorders Ongoing Oklahoma
Pediatric Psychiatry Ongoing Oklahoma
Psychiatry Ongoing Oklahoma



AAP Epilepsy and Comorbidities ECHO
Are you a pediatric primary practitioner interested in diagnosing and treating pediatric epilepsy? We encourage practices from the Heartland region to join the American Academy of Pediatrics Division of Innovation, National Coordinating Center for Epilepsy to learn how to diagnose earlier and more accurately, reduce and monitor anti-seizure therapy and more. The AAP Epilepsy and Comorbidities ECHO will use the American Academy of Neurology measure set for epilepsy as the framework. HTRC’s PI Eve-Lynn Nelson will serve as a psychologist as part of this ECHO team. Please apply by May 7th for the MOC Part 2 and CME option. APPLY NOW

MO HealthNet cuts originating and distance site restrictions for telehealth
New changes to Missouri’s Medicaid telehealth regulations will make it easier for patients  to receive care the care they need. In February, MO HealthNet scrapped its originating and distance site definitions, which restricted reimbursement of telehealth services to live video interaction at qualified health care centers. This change will pave the way for patients to receive care at home, school and work, improving care and alleviating transportation costs.

Distance site requirements for providers have also been eliminated. MO HealthNet providers can now deliver health care from anywhere, including their home, as long as their license allows it. The transfer of a patient’s electronic health records via asynchronous store-and-forward technology is also covered under the new regulations.

The new regulations apply to all MO HealthNet providers giving care to MO HealthNet patients. For more information, contact HTRC at 877-643-HTRC.   READ STATUTE DETAILS

OSU to lead Telehealth Alliance of Oklahoma
Oklahoma State University (OSU), an HTRC partner, will soon take the helm for Telehealth Alliance of Oklahoma (TAO). OSU was already an active member organization of TAO but will now assume responsibility for the day-to-day operations at TAO.

“We jumped at the opportunity,” said Tim Davis, HTRC’s Oklahoma state director, who is headquartered at OSU. “We felt that with HTRC and TAO that would set up OSU as being the telehealth resource center for the state.”

TAO has a diverse group of member organizations and individuals with the shared goal of improving the health of Oklahoman’s through telehealth. HTRC’s former Oklahoma state director, Cynthia Scheiderman-Miller was a driving force in starting the organization and previously served as executive director.

Kansas parity bill faces new challenge
As reported by the Topeka Capital-Journal, the fate of the Kansas telehealth coverage parity bill, HB 2028, is in jeopardy after legislators were lobbied to attach anti-abortion language to the bill. The language would prohibit medication-induced abortions via telehealth, which is already prohibited by Kansas law. According to the Capital-Journal article, an anti-abortion group, Kansans for Life, wants to include a non-severability clause that would nullify the telehealth parity law if the law prohibiting medication-induced abortions via telehealth is struck down in court. In 2017, two similar Idaho laws were overturned in federal court.

Project ECHO
Project ECHO is a program using telehealth to revolutionize medical education and improve access to specialty care. Project ECHO, which was developed by the University of New Mexico School of Medicine, works by connecting primary care clinicians with specialist teams via videoconference.

Each specialty area has its own ECHO, such as autism or chronic pain. ECHO teams meet regularly to collaborate with primary care providers. Learn more