The Dup15q Alliance is proud to be a partner in the Epilepsy Learning Healthcare System (ELHS): https://www.epilepsy.com/make-difference/epilepsy-learning-healthcare-system-elhs
Imagine building a learning health system in which all people – family and community members, clinicians, researchers and health system leaders – work together. They design, implement, and share the results of collaborative research and quality improvement efforts. And this work leads to better health outcomes and increased quality, experience, and value in care. A learning health system approach can dramatically acclerate the ability to generate new knowledge and put it into practice.
In 2018, the Epilepsy Foundation was awarded a PCORNet Learning Health System Network Pilot Collaborative grant to establish an Epilepsy Learning Healthcare System. Read the News Release Here
Our vision is for all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects, and we won’t stop until we get there.
Our mission is to design and implement a system of co-production that will improve outcomes for people with epilepsy and their families/caregivers in the following specific ways:
- Improve quality of life
- Improve seizure control
- Improve seizure freedom
Co-production means that patients, families and health care professionals work together towards similar ends. Patients and families are part of the whole process.