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PROJECT: e-Care Plan for people with Multiple Chronic Conditions (MCC)
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DOCUMENT TITLE: Long COVID (PASC) Data Element Analysis Spreadsheet
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WORKING PERIOD: January 1 - September 29, 2022
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Note for the Reviewer:
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This is an analysis spreadsheet for long COVID (PASC) data elements and related data elements of importance to patients with long COVID (PASC) and their caregivers and clinicians. It also contains the high level concepts (data element), detailed attributes, and scope definitions for value sets that are/will be developed to be used with the relevant FHIR Profile or Resource.

Since the domain of long COVID is relatively new and since coding systems continously change, please consider this spreadsheet a working document that will grow and change over time. The ultimate source of truth for how the data elements are represented in FHIR will be in the Multiple Chronic Conditions eCare Plan FHIR Implementation Guide: https://build.fhir.org/ig/HL7/fhir-us-mcc/branches/master/index.html.

Please reach out to Karen (karen.bertodatti@emiadvisors.net) with questions or if you need understanding on how to comment on the analysis or on the Implmentation Guide.
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FAQs
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How were these data elements and definitions identified?
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The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has assembed a Technical Expert Panel of clinicians, researchers, patients, patient advocates, and caregivers to inform the identification of data elements associated with long COVID (PASC). A team of terminologists and FHIR/Implementation Guide SMEs have worked with the TEP to identify, define, and refine this spreadsheet.
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What are value sets?
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Value sets are lists of codes and corresponding terms that define clinical concepts to support effective and interoperable health information exchange.
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How do you determine whether or not to reuse an existing value set?
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You can reuse an existing value set when you know the author, are aligned with the approach the authors took to develop the value set, and know that the value set is being updated and maintained in a way that is aligned with your project. If these factors aren't in place, there is a risk to reusing existing value sets. For our MCC project, we will build and maintain our own value sets where we have determined the risk of reusing existing ones is too high.
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Where can I go to see the specific codes included in a value set for a data element or concept?
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The value sets are/will be built and housed in the Value Set Authority Center (VSAC) which is a repository and authoring tool for public value sets created by external programs. TEP members with a login for the project Confluence can view specific value sets here: https://ecareplan.ahrq.gov/collaborate/pages/viewpage.action?spaceKey=EC&title=Document+Library
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Where can I learn more about this project?
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You can learn more about the e-Care Plan for people with Multiple Chronic Conditions (MCC) project here: https://ecareplan.ahrq.gov/collaborate/display/EC/eCare+Plan+Home.
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