Track: 13. Health Services (Delivery of Care, Access to Care, Health Care Models)
(185) Centralized Efforts Transforming Global Care: The Ten-Year Impact of a Patient Advocacy Group - Medical Expert Partnership on Recognizing and Treating a Rare and Complex Epileptic Brain Malformation Syndrome
CoFounder/Vice President Hope for Hypothalamic Hamartomas Buckeye, Arizona
Rationale: Hypothalamic Hamartoma with Epilepsy is a little-known, rare and complex syndrome. Gelastic seizures, the hallmark seizure-type, are often missed. By the early 21st century recognition and treatment of the syndrome was limited to pockets of expertise in diverse global locations. Even within the expert centres, patient follow-up was inconsistent. A patient group, Hope for HH, has been transformative in uniting these geographically and clinically diverse experts, initiating and enabling cross-border, cross-specialty co-operation for mutual benefit. Methods: Hope for HH transforms patient outcomes through its diverse, expert Medical Advisory Board[1], through hosting expert International Symposia[2] and through funding and supporting cross-border research partnerships. [1]Hope for HH Medical Advisory Board [2] For example: Fourth International Symposium on HH Results:
Surgical techniques that were nascent in 2008 and limited to a handful of countries have been, through this patient/professional partnership, developed, refined and disseminated internationally, giving hope to patients wherever they live. Work is on-going studying the comparative effectiveness of surgical techniques.
International Symposia, held every three years, provide specialists with an invaluable platform for discussion with peers across institutions and disciplines; they drive research and enhance understanding internationally.
The partnership has developed an HH Clinical Pathway, accepted as best practice at most specialist epilepsy centers. Expert committees chaired by Medical Advisory Board members are working on the creation of Clinical Guidelines for the diagnosis and treatment of HH
Cross-border research initiatives, such as a genetic study run by University of Melbourne with input from centers in the U.S., Europe and Japan[1], promote greater understanding of etiology, moving closer to prevention and cure.
Through patient advocate input, focus on surgical outcomes has widened. HH is now regarded as a complex syndrome requiring a multidisciplinary approach and cross-specialty cooperation. Improved quality of life sits alongside seizure control as a primary treatment goal.
[1]'An Exciting New Approach to Genetic Diagnosis of Children with HH' by Dr Samuel Berkovic and Dr Michael Hildebrand Epilepsy Research Centre, Austin Health, Department of Medicine, University of Melbourne, Victoria, Australia Conclusions: Through mutually respectful partnership, patient advocates and medical professionals can promote international cross-specialty relationships which enrich medical understanding and transform patient care.
Funding: Please list any funding that was received in support of this abstract.: None
