- Agency for Healthcare Research and Quality (AHRQ) and the National Institutes of Health / National Institute of Diabetes and Digestive and Kidney Diseases (NIH/NIDDK)
- 05/01/2021
- Standardized Collection of Standardized Clinical Data
- Collection of Participant-Provided Information
- Linking of Clinical and Other Data for Research
STATUS: Active Project
BACKGROUND
This is a joint agency project involving Agency for Healthcare Research and Quality (AHRQ) and the National Institutes of Health / National Institute of Diabetes and Digestive and Kidney Diseases (NIH/NIDDK) that will build data capacity to conduct pragmatic, patient-centered outcomes research (PCOR) on COVID-19 by expanding on standards-based, interoperable electronic (eCare) plan tools designed to facilitate aggregation and sharing of critical patient-centered data across home-, community-, clinic- and research-based settings.
Building on a previously funded project, this project will expand the clinician- and patient-facing eCare plan applications and an accompanying FHIR implementation guide (IG) to compile, review, update and exchange critical patient health data for people with multiple chronic conditions, including chronic kidney disease (CKD), cardiovascular disease (CVD), diabetes, and/or chronic pain with/without opioid use disorder (OUD). In addition, COVID-19 and post-acute sequelae of COVID 19 (PASC) data elements will be added to the existing applications and IG, and a novel, unpaid caregiver-facing e-care plan application will be developed encompassing COVID-19 and PASC.
PROJECT PURPOSE & OBJECTIVES
The purpose of this project is to address the following objectives:
- Identify data elements & standards for COVID-19 risks, natural history & sequelae.
- Expand the Health Level 7 (HL7) FHIR MCC eCare Plan IG to address COVID-19 data elements and caregiver app considerations
- Expand patient and clinician software applications to include COVID-19 data elements
- Develop a software application for use by unpaid caregivers
- Test and evaluate the new COVID-19 patient, provider, and caregiver apps as well as the IG in real world settings
- Revise e-Care plan applications and IG to address pilot findings
- Disseminate project resources for use by stakeholders