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Grantee Spotlight

University of Nebraska Medical Center
Epilepsy Foundation of North Central Illinois, Iowa and Nebraska
 
What is the main goal of your project?
 
The main goal of our project is to improve the access to quality care for rural Nebraska children and youth with epilepsy through both the increased use of existing telehealth system in Nebraska and by taking advantage of recent developments in new Internet-based technologies. These enable such opportunities as desktop consultation from originating point-of-service to rural clients, education and online parental support communities.  

What partnerships do you have or are you seeking to develop?

EFNCIL: Epilepsy Foundation of North Central Illinois, Iowa and Nebraska is a strong partner and essential to our education efforts.
Kearney Clinic and Good Samaritan Hospital in Kearney: This is a first step in reaching the rural pediatric epilepsy patients and their families through telehealth.
Dr. Deepak Madhaven, epileptologist: We have partnered to develop CME programs on the latest treatments and current AED protocols for epilepsy for delivery via telehealth in year 2 or 3 of the grant.
Dr. Eve-Lyn Nelson, Director of Telehealth Services at University of Kansas: Dr. Nelson has developed a telehealth system that provides mental health services for underserved children in Kansas and will be working with us to further enhance the current telehealth system in place here in Nebraska.
Nebraska School Nurses: Nebraska School Nurses have partnered with us to educate the school nurses about epilepsy, seizure recognition, seizure first aid and diminishing the stigma of epilepsy with students.
Brain Injury Association of Nebraska (BIAN): BIAN has a strong network across the state and good lobbying connections. By exhibiting at their events and collaborating with them, we are able to reach many people across the state.
LIFE (Lifestyle Innovations for Epilepsy): The Omaha Pediatric Support Group leader, Stacey Doty, has founded a new non-profit to help families and patients dealing with epilepsy develop healthy lifestyles which can potentially diminish the incidence of seizures.
Dr. Thomas F. Tonniges and staff of Boys Town Institute for Child Health Improvement: We are seeking to improve the care of children and youth with epilepsy within the medical home medical practices that they are developing.
O'Hana Kids' News: An on-line newsletter for parents of children with developmental disabilities in rural Nebraska.
Creighton University School of Nursing: We are helping the school of nursing improve and update the medical education about epilepsy that they are providing to student nurses.
  
In your opinion, what makes your project unique?
 
Our project is unique in the combination of approaches to distance learning and telehealth that are being employed. Not only are we seeking to promote and increase the number of specialist medial visits accomplished via telemedicine, we are also seeking to use distance education for epilepsy training of primary care physicians (CMEs on newer medications and treatments for epilepsy), nursing students, school nurses and school staff. We plan to use social media (blogs, facebook, wikis and online communities) to reach parents, families and youth with epilepsy to improve their own understanding of epilepsy and its treatments, as well as to reduce the stigma and aloneness that rural epilepsy patients often feel. 

What do you think your biggest challenge is?

Our biggest challenge has been to convince primary care and specialty physicians in Nebraska that telemedicine is a valid treatment option, can provide examination results comparable to those when a client is seen face-to-face and can be a financially viable means of delivering quality care to grossly underserved clients. In addition to service delivery, distance learning is an excellent source of quality medical education that can improve a PCP's effectiveness and can help reduce the time and cost of traveling across our very rural state.