| Submitted By: Nedra Garrett / CDC | |
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| Data Element Information | |
| Use Case Description(s) | |
| Use Case Description | According to a publication of the American Psychological Association, disability is a particular identity context, one that marks individuals as part of a group and as members of a minority sometimes subjected to marginalization, prejudice or discrimination. Recognizing disability as a demographic variable can help public health professionals to specifically tailor health interventions with the goal of helping people with disabilities achieve health equity. The data collection standards established by the ACA include many other demographic variables such as race, ethnicity, and sex. Collecting and transmitting data on disability in a standardized way is vital to recognition of disability as a key component of identity and demographics can be understood in an intersectional way, incorporating race/ethnicity, age, sex, and disability together for a more complete understanding of patient demographics. Capturing disability type is very important to this since different interventions are applicable to people with different disability types that have different accessibility requirements. Use would be frequent, as 26% of US adults (61 Million) have a disability. Due to the large percentage of the population of people with disabilities, the usefulness of these data, and the importance to health equity, it is essential to standardize collection of this data as part of USCDI. Disability data could be collected via electronic case reporting (eCR) which provides case reports to state, tribal, local, or territorial (STLT) public health agencies (PHA) for up to 292 reportable diseases and conditions. Submission of reports of persons with these conditions is required by law in every US State and Territory. Public health epidemiologists have identified the data elements necessary to be included in electronic case reports from healthcare organizations and providers. The transition is underway from providing these reports via fax, mail, email, or phone to using data available in the electronic health records to submit reports electronically to all PHAs. As of September 13, 2020, over 9,300 healthcare facilities are using eCR to submit these data. Once received at the PHA, this data is use for surveillance, case management and public health response efforts such as contact tracing or other mitigation efforts. |
| Estimated number of stakeholders capturing, accessing using or exchanging | This data is exchanged as part of the extensive implementation of electronic case reporting in the US. Target is nationwide, currently 5400+ sites are reporting. There are between 56 and 2400 public health agencies using this data. Electronic case reporting is also cited in the Cares Act regulations. |
| Link to use case project page | https://www.cdc.gov/ecr/index.html |
| Use Case Description | One in four adults (26%) in the U.S. report having some type of disability People with disabilities face long-standing systemic health and social inequities including ableism Few public health surveillance systems collect disability status and improving this is one of CDC’s Health Equity CORE goals. The six questions requested for inclusion by NCBDDD are the required minimum standard for disability demographic data collection according to HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status | ASPE. |
| Estimated number of stakeholders capturing, accessing using or exchanging | All 50 states participate in one or more of the public health use cases that exchange these data elements. Up to 14 territorial or city jurisdictions also participate in one of these public health use cases and use these data elements. |
| Link to use case project page | https://aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-disability-0 |
| Healthcare Aims |
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| Maturity of Use and Technical Specifications for Data Element | |
| Applicable Standard(s) | HL7 FHIR: US Public Health Disability Status HL7 CDA: Disability Status Observation VSAC Value Set: Disability Status (LOINC) https://www.hl7.org/implement/standards/product_brief.cfm?product_id=519 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=436 https://vsac.nlm.nih.gov/valueset/2.16.840.1.113762.1.4.1099.49/expansion http://hl7.org/fhir/us/e |
| Additional Specifications | HL7 FHIR® Implementation Guide: Electronic Case Reporting (eCR) based on FHIR R4 HL7 CDA® R2 Implementation Guide: Public Health Case Report - the Electronic Initial Case Report (eICR) HL7 FHIR: US Public Health Disability Status HL7 CDA: Disability Status Observation HL7.FHIR.US.ECR\Disability Status - Mappings - FHIR v4.0.1 |
| Current Use | In limited use in test environments only |
| Supporting Artifacts |
NOTES/ADDITIONAL INFORMATION FOR PREVIOUS QUESTION: In limited use in test environments only (e.g., this question set is used extensively in national surveys but is not currently standard in EHRs, although it was proposed as a part of HL7 standards in most recent ballot Soon to be published: HL7 FHIR® Implementation Guide: Electronic Case Reporting (eCR) STU Release 2 Soon to be published: HL7 CDA® R2 Implementation Guide: Public Health Case Report - the Electronic Initial Case Report (eICR) Release 1, STU Release 3.0 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=519 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=436 HL7.FHIR.US.ECR\Disability Status - FHIR v4.0.1 |
| Number of organizations/individuals with which this data element has been electronically exchanged | N/A |
| Potential Challenges | |
| Restrictions on Standardization (e.g. proprietary code) | These data elements are straightforward in nature and should not present a large burden to implement provided the EHR system is capturing the data. |
| Restrictions on Use (e.g. licensing, user fees) | These data elements are straightforward in nature and should not present a large burden to implement provided the EHR system is capturing the data. |
| Privacy and Security Concerns | These data elements are straightforward in nature and should not present a large burden to implement provided the EHR system is capturing the data. |
| Estimate of Overall Burden | These data elements are straightforward in nature and should not present a large burden to implement provided the EHR system is capturing the data. |
| ONC Evaluation Details Each submitted Data Element has been evaluated based on the following 4 criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI |
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| Maturity – Standards/Technical Specifications | Level 1/2 - Must be represented by a vocabulary standard or an element of a published technical specification |
| Maturity - Current Use | Comment Level - Used in limited test environments or pilots |
| Maturity - Current Exchange | Comment Level - Demonstrates limited exchange with external organizations, on same or different EHR/HIT systems |
| Breadth of Applicability - # Stakeholders Impacted | Comment Level - Used by few stakeholders, or for narrowly defined conditions or events |
Comment