The ALS Association Mid-America Chapter is a nonprofit social services agency serving the community of people living with amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease, and their associated family members, caregivers, and clinicians. The Chapter’s innovative practices have garnered national attention in the past few years. 

It began when researchers at KU were interested in using ALS Association data over time from patients who had passed away. This research led to two areas of innovation that involve the use of technology to connect more meaningfully with the people being served. The first is an online engagement platform that tracks the condition’s progression and will ultimately feed clinical research. The second is using video links between knowledge resources. 

These telemedicine efforts have added importance for this ALS Association chapter. For almost 10 years prior to these innovations, the Mid-America Chapter was trying to open a clinic in Wichita, Kansas. This is because all of Kansas only had one clinic, located in the Kansas City area, making clinic visits impossible to many ALS patients. In early 2017, a Wichita clinic was opened as a telemedicine site for ALS clinical care. This clinic utilizes the online engagement platform and video links mentioned above. 

Open the second and fourth Thursday of the month, this teleclinic offers medical assistance from both a local and a remote team. The local team begins the clinic visit, when physical, occupational, respiratory, and speech therapists, along with a social worker, meet to plan individualized care for each patient. These team members are then able to meet with neurologists and nurse case managers located in Kansas City through their secure telemedicine platform. Next, patients receive hands-on assessments and teleconferences. 

The Chapter won the annual Innovation Award at the 2018 conference for the ALS Telemedicine Treatment Center located in Wichita. This is just one way in which the national organization with which the Chapter is affiliated has gotten interested in using the KC approach as a model and in using data more broadly. 

The Chapter has raised over $500,000 to sustain this innovation over 10 years. To learn more about the Chapter’s work, visit their website.

Tara Dhakal and Colleen Wachter from the ALS Mid-America Chapter discussed these innovative practices with the KCDD Health Innovation Team on April 24, 2019.

Further Reading