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eCare Plan Joint NIH/NIDDK AHRQ Project


Long COVID-19 (PASC) Domain & Caregiver TEP

Domain Description

NIDDK and AHRQ convened the Long COVID and Caregiver Technical Expert Panel (TEP) beginning in August of 2021 to accomplish three key objectives: 1) identify data elements important to the care of people with COVID-19 and/or long COVID (in the context of multiple chronic conditions, MCC), 2) support the inclusion of unpaid caregivers on the care team through access to patient data, and 3) identify data elements relevant to understanding and addressing how the caregiver role affects health outcomes, given that many TEP members are caregivers themselves for people with MCC. In addition, the TEP will help identify data standards from common clinical terminologies (i.e., ICD-10, SNOMED-CT, LOINC, RxNorm, CPT) associated with each data element, in order to improve interoperability of these data elements across settings of care.

For information on roles and responsibilities, expectations, and administration of the PASC & Caregiver TEP, please consult the TEP Charter.


Meeting Materials 

Date

Meeting Name

Meeting Agenda and Materials

Meeting Summary

 

September Meeting

Agenda

  • Welcome 
  • Caregiver Considerations Next Steps 
  • TEP Meeting Schedule 
  • E-Care App Demo and Discussion 
  • Next Steps

Materials

 

August Meeting

Agenda

  • Welcome
  • Long COVID Data Elements
    • Brief recap of the data element identification process
    • Vote results and thematic comments
    • Value set builds
  • Discussion: Caregiver Considerations in Care Planning and Coordination
  • Next Steps

Materials

 

June Meeting

Agenda

  • Welcome
  • Recap: MCC eCare Project Objective, Deliverables, and Domain Identification Process
  • Discussion: Outstanding Long COVID Data Elements Topics
    • Pre-existing Conditions
    • Approach for Interventions (Labs and Treatments)
    • Assessment Scales
  • TEP Vote on Long COVID Data Elements Analysis Spreadsheet
  • Next Steps

Materials

 

May Meeting

Agenda

  • Welcome
  • Long COVID Health Concerns Analysis Review
  • Long COVID Interventions Categories Discussion
  • Next Steps

Materials

 

April Meeting

Agenda

  • Welcome
  • Long COVID Data Elements Discussion 
  • Caregiver Considerations
    • Overview of FHIR Care Team
    • Discuss Care Team Member from Caregiver Perspective
  • Next Steps

Materials

 

March Meeting

Agenda

  • Welcome and Housekeeping 
  • Update on Caregiver App Development 
  • Long COVID Discussion 
  • Next Steps 

Prework: If you have any documentation for long COVID interventions, please share them with karen.bertodatti@emiadvisors.net by Feb 28.

Materials

 

February Meeting

Agenda

  • Welcome & Housekeeping
  • Walkthrough of Data Element Gathering Spreadsheet and review of Long COVID symptoms list
  • Next Steps

Materials

January Meeting

Agenda

Materials

 

December Meeting

Agenda

  • Welcome 
  • Co-chair Vote
  • Presentation and Discussion
    • Approach to Data Element Identification
    • Review of COVID-19 value sets 
  • Next Steps 

Materials

 

November Meeting

Agenda

  • Welcome & Introductions
  • Context & Framing
  • Presentation & Discussion: Review of Caregiver Apps
  • TEP Charter & Co-Chair Nominations 
  • Next Steps

Materials

MCC eCare Plan Project | PASC & Caregiver TEP Meeting Summary - Nov 18, 2021 (PDF, 914 KB)

 

Kick-off Meeting

Materials

Coming Soon



Participants 

*Denotes Co-Chair

Name
Alecia Clary, Ph.D., MSW
Alex Spyropoulous, MD
Allan Levey, MD, PhD
Aluko Hope, MD
Andrea Lerner, MD, MS
Anuj Dalal, MD
Audie Atienza, PhD
Barrett Bowling, MD
Bill Adams, MD
C. Grace Whiting, JD
Carla Rodriguez-Watson, PhD
Carole White, PhD, RN
Caroline Blaum, MD, MS
Carolyn Clevenger, DNP, RN
Charisse Madlock-Brown, PhD, MLS 
Claire Ashton-James, PhD
David Dorr, MD
David Graham, MD
Diana Berrent
Elizabeth Unger, MD, PhD
Emily Taylor
Esther Oh, MD, PhD
Glenna Brewster, PhD, RN
Hector S. Izurieta, MD, MPH, PhD
Henry Parkman, MD
Ian Plumb, MBBS, MS
Ivonne H. Schulman, MD
Jeff Sparks, MD, MMSc
Jennifer Wolff, PhD
Jerry Osheroff, MD
Jerry Suls, PhD*
Kailah Davis, PhD
Karen Rose, PhD, MS, RN
Katie Brandt*
Kevin Bozic, MD, MBA
Laura Plantinga, PhD, MS
Loretta Christensen, MD, MBA, MSJ
Marcel Salive, MD, MPH
Marjorie Kelley, PhD, MS, RN
Marlıs Gonzalez-Fernandez, MD, PhD
Pradeep Podila, PhD
Rachel Garfield, PhD, MHS
Shelly Spiro, RPh, FASCP
Suzanne Pincus
Tim Carney, PhD, MPH, MBA
Vanessa Diaz, MD