Ignite Creation Date:
2024-05-06 @ 8:08 PM
Last Modification Date:
2024-10-26 @ 3:21 PM
Study NCT ID:
NCT06265103
Status:
RECRUITING
Last Update Posted:
2024-02-20
First Post:
2020-05-28
Brief Title:
Epilepsy Learning Healthcare System ELHS
Sponsor:
Epilepsy Foundation of America
Organization:
Epilepsy Foundation of America
Study Overview
Official Title:
Epilepsy Learning Healthcare System ELHS for Quality Care Outcome Improvement
Status:
RECRUITING
Status Verified Date:
2024-08
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
ELHS
Brief Summary:
The Epilepsy Learning Health System ELHS is a quality improvement and research network to improve outcomes for people with epilepsy The ELHS is designed as a model of value-based chronic care for epilepsy as envisioned by the National Academies of Medicine Committee in their landmark reports The Learning Health System and Epilepsy Across the Spectrum Promoting Health and Understanding
The ELHS network is a collaboration among clinicians patients and researchers that promotes the use of data for multiple purposes including one-on-one clinical care population management quality improvement and research The ELHS Registry includes data on children and adults with epilepsy collected during the process of standard epilepsy care These data are used to create population health reports and to track changes in outcomes over time ELHS teams use quality improvement methods such as Plan-Do-Study-Act PDSA cycles to continuously learn how to improve care
The ELHS network is a collaboration among clinicians patients and researchers that promotes the use of data for multiple purposes including one-on-one clinical care population management quality improvement and research The ELHS Registry includes data on children and adults with epilepsy collected during the process of standard epilepsy care These data are used to create population health reports and to track changes in outcomes over time ELHS teams use quality improvement methods such as Plan-Do-Study-Act PDSA cycles to continuously learn how to improve care
Detailed Description:
The Epilepsy Learning Healthcare System ELHS pronounced el-is involves patients and families living with epilepsy clinicians who provide epilepsy care including pediatric and adult epileptologists neurology nurses and others community services providers as well as researchers with clinical research expertise in community-based observational interventional implementation and dissemination studies Each stakeholder agrees to work together to improve outcomes for people with epilepsy
NETWORK AIM The purpose of the network is to improve seizure control and quality of life for people with epilepsy through a learning healthcare system in which clinical data are collected analyzed and rapidly disseminated to change practice
BACKGROUND Epilepsy is a chronic neurological disorder characterized by unprovoked seizures Epidemiological data indicate that 10 of Americans will suffer at least one seizure at some point in their lives and 1-2 of Americans have epilepsy Active epilepsy affects 34 million Americans - currently estimated at 29 Million adults and around 460000 children At least 50 of the total population of individuals with epilepsy will have started having seizures at less than 20 years of age More than half of US adults with active epilepsy have high school diplomaGED or less education Compared to the general public people with epilepsy have higher rates of premature mortality injury cognitive impairment depression social isolation and unemployment In addition there are health disparities HD in epilepsy that create worse health outcomes for individuals belonging to raceethnicity minority groups or low-income households those living in rural areas and individuals with opposite or non-binary gender preferences Epilepsy disparities result in worse mental health more frequent emergency department visits increased hospitalization rates and increased risk of early death for these underserved groups
Epilepsy is not a single disease Rather it is a heterogeneous set of disorders with genetic and acquired etiologies The diversity of seizure types epilepsy syndromes outcomes and etiologies cannot be overstated It is likely that the extreme heterogeneity of the epilepsies is at least partially responsible for slow progress towards meaningful treatment strategies to improve outcomes For some epilepsy is a manageable chronic illness -- affected individuals have risen to the highest echelons of professional success However for others epilepsy is a devastating and progressive disease leading to cognitive regression and early death Wide variations in epilepsy care delivery and clinical practice may also contribute to poor individual outcomes
The ELHS community will work towards its mission of improving outcomes for children and adults with Epilepsy by setting up a platform to support continuous and sustained improvement activities
The ELHS network uses the Institute for Healthcare Improvements Model for Improvement focusing on the three questions - What are we trying to accomplish How will we know that a change is an improvement What change can we make that will result in improvement Iterative Plan- Do-Study-Act PDSA learning cycles are used to test and implement changes The Model for Improvement is widely accepted across healthcare systems as a method to improve quality and health outcomes It is used successfully in a growing number of patient safety and disease-focused learning health networks
With guidance from experts in QI and care delivery participating programs collect and share data test specific changes in care and determine how to redesign and incorporate improvements into daily practice Most measures are reported monthly and shared transparently across the ELHS Network to generate discussion and drive QI efforts Network-wide data are reviewed monthly on Action Period calls to learn from the variation amongst programs and to recognize and celebrate network-wide improvements
NETWORK AIM The purpose of the network is to improve seizure control and quality of life for people with epilepsy through a learning healthcare system in which clinical data are collected analyzed and rapidly disseminated to change practice
BACKGROUND Epilepsy is a chronic neurological disorder characterized by unprovoked seizures Epidemiological data indicate that 10 of Americans will suffer at least one seizure at some point in their lives and 1-2 of Americans have epilepsy Active epilepsy affects 34 million Americans - currently estimated at 29 Million adults and around 460000 children At least 50 of the total population of individuals with epilepsy will have started having seizures at less than 20 years of age More than half of US adults with active epilepsy have high school diplomaGED or less education Compared to the general public people with epilepsy have higher rates of premature mortality injury cognitive impairment depression social isolation and unemployment In addition there are health disparities HD in epilepsy that create worse health outcomes for individuals belonging to raceethnicity minority groups or low-income households those living in rural areas and individuals with opposite or non-binary gender preferences Epilepsy disparities result in worse mental health more frequent emergency department visits increased hospitalization rates and increased risk of early death for these underserved groups
Epilepsy is not a single disease Rather it is a heterogeneous set of disorders with genetic and acquired etiologies The diversity of seizure types epilepsy syndromes outcomes and etiologies cannot be overstated It is likely that the extreme heterogeneity of the epilepsies is at least partially responsible for slow progress towards meaningful treatment strategies to improve outcomes For some epilepsy is a manageable chronic illness -- affected individuals have risen to the highest echelons of professional success However for others epilepsy is a devastating and progressive disease leading to cognitive regression and early death Wide variations in epilepsy care delivery and clinical practice may also contribute to poor individual outcomes
The ELHS community will work towards its mission of improving outcomes for children and adults with Epilepsy by setting up a platform to support continuous and sustained improvement activities
The ELHS network uses the Institute for Healthcare Improvements Model for Improvement focusing on the three questions - What are we trying to accomplish How will we know that a change is an improvement What change can we make that will result in improvement Iterative Plan- Do-Study-Act PDSA learning cycles are used to test and implement changes The Model for Improvement is widely accepted across healthcare systems as a method to improve quality and health outcomes It is used successfully in a growing number of patient safety and disease-focused learning health networks
With guidance from experts in QI and care delivery participating programs collect and share data test specific changes in care and determine how to redesign and incorporate improvements into daily practice Most measures are reported monthly and shared transparently across the ELHS Network to generate discussion and drive QI efforts Network-wide data are reviewed monthly on Action Period calls to learn from the variation amongst programs and to recognize and celebrate network-wide improvements
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None