|Submitted By: Nedra Garrett / Centers for Disease Control and Prevention|
|Data Element Information|
|Use Case Description(s)|
|Use Case Description||"Actively monitoring diseases, making decisions about public health threats, identifying trends in healthcare services utilization and other public health matters depend on accessible and accurate data. Electronic Health Records (EHRs) are a data source that can provide timely and relevant data beyond its use by health care providers. EHR data, if made more available for public health professionals and researchers, can lead to more rapid disease detection, tracking, and treatment and innovation in healthcare delivery.
Cause of Death Information :
For deaths that occur in a hospital cause of death information can be found within various sections of a patient's electronic health record. There are current USCDI data classes and elements that capture items that would help inform cause of death for a patient. However, it is important to capture the whole picture of information when determining cause of death. Sections or modules from an EHR will help inform the certifying physician when interoperability is gainfully supported between an EHR and a state's electronic death registration system (EDRS).
The details on a US Standard death certificate are important sources of public health surveillance data and when viewed collectively can help uncover health disparities, inform policy and funding decisions, and improve outbreak and disaster response efforts. These data are relied on by researchers, epidemiologists, clinicians, policymakers, and many others working to identify problems and improve public health outcomes.
The Making EHR Data More Available for Research and Public Health (MedMorph) project's goal is to create a reliable, scalable, and interoperable method to get electronic health record data for multiple public health and research scenarios (use cases). MedMorph has identified Vital Records Death Reporting, Hepatitis C, Patient-Centered Clinical Research Network (PCORnet) and Cancer use cases that support the adoption of cause of death information data element. These specific use cases are described in more depth on their respective web pages.
The medical examiner or physician certifying the cause and manner of death must have access to timely and comprehensive clinical information about the decedent including pregnancy status if the decedent is female. Information from an EHR can help in this process by providing timely and accurate information while potentially improving the overall efficiency of the physician’s workflow.
More specifically, related to the data element on pregnancy status, suppose a female patient dies in the hospital/health setting and the attending physician has answered several questions related to the pregnancy status at the time of death. The physician now must log into the EDRS to fill out the death certificate and answer a set of similar itemized questions about the decedent's pregnancy status. This is a time-consuming process and may result in data entry errors from having to refer to multiple sources of information and systems when completing the death certificate.
Having the pregnancy status-related information from the EHR available in the EDRS for reference would help expedite the data entry process. Depending on how comprehensive the information is from the EHR, it can improve the data quality and the overall user experience by not having to log into two different systems. There may or may not be a 1:1 relationship between the information in the EHR and the EDRS and the certifier may have to depend on descriptive information from the EHR to help inform the selections in the EDRS.
Was Autopsy Performed:
Monitoring disease and making decisions about public health threats depends on accessible and accurate data. EHRs are a data source with the potential to provide timely and relevant data beyond its use by health care providers. EHR data, if made more available for public health professionals and researchers, can lead to innovations and more rapid disease detection.
The details on a US Standard death certificate are important sources of public health surveillance data and when viewed collectively can help uncover health disparities, inform policy and funding decisions, and improve outbreak and disaster response efforts. These data are relied on by researchers, epidemiologists, clinicians, policymakers, and many others working to identify problems, find solutions, and save lives.
The medical examiner or physician certifying the cause and manner of death must have access to timely and comprehensive clinical information about the decedent including autopsy information. Information from an EHR clarifying if an autopsy was performed can help prompt the certifier to refer to the autopsy report if one is available. If the autopsy report is saved in an EMR and can be made available in the EDRS though FHIR based interoperability, it can potentially improve the overall efficiency of the physician’s workflow.
Accurate determination of the cause and manner of death on the death certificate is eventually translated into ICD-10 codes and used to generate mortality statistics for use by the social security administration, Centers for Medicare and Medicaid, and public health surveillance among others.
|Estimated number of stakeholders capturing, accessing using or exchanging||Each year there are appropriately 2.8 million deaths in the United States. Deaths are certified by the attending physician or the Medical Examiner/Coroner in the Electronic Death Registration System. The cause of death information would be useful for the proportion of deaths that occur in a hospital or health care setting and/or for which an EHR record is available. The percent of deaths in the US for which a EHR records exists is largely unknown but given the large volume of deaths in the US each year, even a small percentage can result in substantial gains in overall efficiency.
Death Reporting: https://www.cdc.gov/nchs/nvss/deaths.htm
Hepatitis C: https://www.cdc.gov/hepatitis/hcv/index.htm
Cancer Reporting: https://www.cdc.gov/cancer/npcr/
|Link to use case project page||https://www.cdc.gov/csels/phio/making-ehr-data-more-available.html|
|Maturity of Use and Technical Specifications for Data Element|
Summary of death note: 47046-8
Physician Summary of death note: 83796-3
Nurse Summary of death note: 84273-2
US Standard Certificate of Death
Hepatitis C Case Report Form
"LOINC Codes for death note summaries:
US Standard Certificate of Death: https://www.cdc.gov/nchs/data/dvs/DEATH11-03final-ACC.pdf
Pregnancy History - While a one to one relationship may not exist between the information in the EHR and what is needed in a state's electronic death registration system (EDRS), the information in the EHR (even if available in longhand), can help inform filling out the following in the EDRS.
□ Not pregnant within the past year
□ Pregnant at the time of death
□ Not pregnant, but pregnant within 42 days of death
□ Not pregnant, but pregnant 43 days to 1 year before death
□ Unknown if pregnant within the past year
Hepatitis C Case Report Form: https://www.cdc.gov/hepatitis/pdfs/HepatitisCaseRprtForm.pdf"
|Additional Specifications||"Vital Records Death Reporting FHIR Implementation Guide 1.0: http://build.fhir.org/ig/HL7/vrdr/
Vital Records Death Reporting HL7 Version 2.6 Implementation Guide: Vital Records Death Reporting, Release 1 STU 2 - US Realm https://www.hl7.org/implement/standards/product_brief.cfm?product_id=209
Vital Records Death Reporting "" IHE Quality, Research and Public Health Technical Framework Supplement – Vital Records
Death Reporting (VRDR) Revision 4.1"" https://www.ihe.net/uploadedFiles/Documents/QRPH/IHE_QRPH_Suppl_VRDR.pdf
HL7 FHIR Common Data Models Harmonization FHIR Implementation Guide http://hl7.org/fhir/us/cdmh/2019May/"
|Current Use||In limited use in test environments only|
"Comment Level – in limited test environment or pilot
IHE Connectathon integration profiles for death reporting (2019) - tested between electronic death registration vendors (EDRS) and NCHS.
HL7 FHIR Connectathon results (Sept 2019 and 2020): Death reporting - tested between EDRS to EDRS (2019) and EDRS to NCHS (2019, 2020).
ForeCare EHR Vendor found within their integration profile"
"IH Connectathon: Found in 'New Search', filter by 'Select an integration profile = Vital Records Death Reporting'
FHIR Connectathon: https://confluence.hl7.org/display/FHIR/2020-09+Public+Health+Track
Results from ForeCare EHR Vendor regarding their integration profile https://product-registry.ihe.net/PR/pr/search.seam?integrationProfile=399&domain=9&date=ANY|1601322328634|1601322328634"
|Number of organizations/individuals with which this data element has been electronically exchanged||4|
"Level 2 – exchanged between 4 or more different EHR/HIT systems. More routinely exchanged between multiple different systems can justify adding to next draft version.
Multiple public health agencies are recipients of a death certificate to include NAPHSIS, other jurisdictions, surveillance programs such as cancer and NCHS.
IHE Connectathon integration profiles for death reporting (2019) - tested between (4) electronic death registration vendors (EDRS) and NCHS.
HL7 FHIR Connectathon results (Sept 2019 and 2020): tested between (5 -7) electronic death registration vendors (EDRS) and NCHS.
NACCHO 360X Interoperability Demonstrations for Death reporting 2020 (FHIR) tested between EDRS and NCHS"
"IHE Connectathon: Found in 'New Search', filter by 'Select an integration profile' https://connectathon-results.ihe.net/view_result.php?rows=company&columns=actor&title=integration_profile
FHIR Connectathon: https://confluence.hl7.org/display/FHIR/2020-09+Public+Health+Track
Death Reporting Dataflow: https://trifolia-fhir.lantanagroup.com/igs/lantana_hapi_r4/vrdr/death_reporting_dataflow.html"
|Restrictions on Standardization (e.g. proprietary code)||None|
|Restrictions on Use (e.g. licensing, user fees)||None|
|Privacy and Security Concerns||None|
|Estimate of Overall Burden||If this data is already in the EHR, then the burden to implement should be minimal because it does not require the creation of a new data element or modifying an existing one.
|Other Implementation Challenges||Costs associated with hosting a SMART on FHIR application and associated messaging costs may not be sustainable by public health and may require a public health costing model.
Composed of both structured (i.e. obtained via pick-list and/or check the box) and unstructured (free text) data. A clinical note may include the history, Review of Systems (ROS), physical data, assessment, diagnosis, plan of care and evaluation of plan, patient teaching and other relevant data points.
Information from the submission form
Data elements or description that provide a woman's pregnancy history at the time of death.