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Expanding epilepsy research within CPRN

Expanding epilepsy research within CPRN. Adam Ostendorf, MD. Background. Surgery. CP. Epilepsy. Co-morbidities. Treatments. Background. Optimize Decision Support. Optimize CPRN Database. CP. Data Collection. Co-morbidities. Epilepsy. Disseminate QM. Revise QM. CER.

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Expanding epilepsy research within CPRN

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  1. Expanding epilepsy research within CPRN Adam Ostendorf, MD

  2. Background Surgery CP Epilepsy Co-morbidities Treatments

  3. Background Optimize Decision Support Optimize CPRN Database CP Data Collection Co-morbidities Epilepsy Disseminate QM Revise QM CER Descriptive Analysis Study QM Hypothesis-driven prospective research Screen/Enroll in real-time

  4. Overarching Aims • Meaningfully yet carefully expand the CPRN epilepsy-specific dataset • Facilitate delivery of quality care within CPRN • Future • Facilitate analysis of quality measures • Facilitate prospective research through the CPRN

  5. Methods Aim 1a • Develop epilepsy-specific common data elements • Working in conjunction with Dr. Grinspan’sLearning Healthcare System for Pediatric Epilepsy (PERF funded) • Tiered - based on provider type • Linked to outcomes measures or quality measures • Revise current Epic and REDCap forms • Review, refine and prioritize

  6. Methods Aim 1a • Example of epilepsy specific data elements • Current: “Seizures controlled (Parents’ opinion)” • Suggestion: “Convulsive seizure in the last 6 months?” • Rationale: AAN quality measure; SUDEP risk

  7. Methods Aim 1b • Develop EHR-based tools for patient/family data entry • Add HRQOL to MyChart or similar tool • CP Pro, PedsQOL-Epilepsy

  8. Methods Aim 1c • Decision support tools • Existing quality measures for: • CP (1) • Epilepsy (8) • Provider-specific

  9. Quality Measure Decision Support Manual Entry Automated Inappropriate Dose and Medication Patient age Activate Alert Yes Convulsive seizures? Patient weight Current medications No Appropriate Dose and Medication Suppress Alert

  10. Methods Aim 2 a and b • 2a - Recruit epilepsy working group within the CPRN • 2b – Provide mentorship for junior faculty members to join working group and develop research skills

  11. Methods Aim 3a • Descriptive analysis of patients with epilepsy within the CPRN cohort • Focus on known risk factors (SUDEP, refractory epilepsy)

  12. Methods Aim 3b • Descriptive analysis of quality measure implementation • Site-specific “dashboard” • Overall adherence tracking

  13. Future directions • CER • Refine current quality measures • Develop new EBP/QM • Develop EHR-based tools for semi-autonomous screening and facilitated enrollment

  14. Impact on CPRN • Revision of the current epilepsy-specific measures in Epic and REDCap • Several more epilepsy-specific questions, including 1 HRQOL form

  15. Value added to CPRN • More robust and meaningful dataset • EHR infrastructure for quality care and prospective research • Non-Epic methods • Aid in aligning the CPRN with other consortia CPRN PERC

  16. Requests • Data collection • Local neurologists/epileptologists for collaboration

  17. Questions?

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