Narrative patient data relevant to the context identified by note types.

Data Element

Information from the submission form
Cause of Death
Description
Cause of death information includes the sequence of events leading to death as well as other conditions significantly contributing to death. The underlying cause of death may be different than the terminal condition. This may include summary of death note, and/or death information that may be captured within the discharge summary note or other cause of death documentation within the clinical notes section.
Submitted By: Maria Michaels / CDC
Data Element Information
Use Case Description(s)
Use Case Description Cause of death information is needed for US Standard Death Certificate which is required by the health authority in the state to be completed and certified for every person who dies in the US. When a person dies in a medical facility the death is typically certified by the attending physician. Information on death certificates, including cause of death, are important for the patient's family as well as a source of public health statistical and surveillance data. The information from death certificates when viewed collectively is used by public health authorities to monitor population health, uncover health disparities, inform policy and funding decisions, and improve outbreak detection and disaster response efforts. These data are also relied on by researchers, epidemiologists, clinicians, policymakers, and many others working to identify threats to health, find solutions, and save lives. Cause of death information is a critical component of the death certificate. Cause of death information is necessary in order to 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.

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.

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.

MedMorph
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.
Estimated number of stakeholders capturing, accessing using or exchanging There are 2.8 million deaths each year and a death certificate is completed for every death with about two-thirds occurring in a medical facility (e.g. inpatient, emergency department) or receiving health care (e.g., hospice, nursing home). The attending physician or other health official completes and certifies for every person who dies in the US in a medical facility or by a Medical Examiner/Coroner who relies on this information when the death occurs outside a health care setting. Cause of death is key information on the death certificate.

All 50 states participate in one or more of the MedMorph public health and research use cases that exchange these death data elements.

There were approximately 1,000,000 practicing physicians (as of 2020), approximately 120,000 certified physician assistants (as of 2019), and 290,000 licensed nurse practitioners (as of 2019). Most of these licensed clinicians interact with one of these public health use cases intermittently, annually. As of 2018, AHA reported 6,146 hospitals in the US experiencing 36,353,946 admissions. Almost all of those hospitals and many of the admissions interact with one or more of the public health and or research use cases.

Supporting Links:
MedMorph: https://www.cdc.gov/csels/phio/making-ehr-data-more-available.html

Death Reporting: https://www.cdc.gov/nchs/nvss/deaths.htm

Hepatitis C: https://www.cdc.gov/hepatitis/hcv/index.htm

PCORnet: https://pcornet.org/

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 https://www.cdc.gov/nchs/nvss/deaths.htm https://www.cdc.gov/hepatitis/hcv/index.htm https://pcornet.org/ https://www.cdc.gov/cancer/npcr/
Supporting Attachments MedMorph-ChronicHepatitisCSurveillanceUseCase-DRAFT.pdf
MedMorph-CancerReportingUseCase-DRAFT.pdf
Healthcare Aims
  • Improving the health of populations
  • Improving provider experience of care
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) LOINC:
Summary of death note: 47046-8: https://loinc.org/47046-8/
Physician Summary of death note: 83796-3: https://loinc.org/83796-3/
Nurse Summary of death note: 84273-2: https://loinc.org/84273-2/

US Standard Certificate of Death: https://www.cdc.gov/nchs/data/dvs/DEATH11-03final-ACC.pdf

Hepatitis C Case Report Form: https://www.cdc.gov/hepatitis/pdfs/HepatitisCaseRprtForm.pdf

Supporting Links:
PHINVADS Value Set: https://phinvads.cdc.gov/vads/ViewValueSet.action?oid=2.16.840.1.114222.4.11.3593
https://loinc.org
Additional Specifications HL7 CDA® R2 Implementation Guide: Consolidated CDA Templates for Clinical Notes - US Realm): http://www.hl7.org/implement/standards/product_brief.cfm?product_id=492. SHALL for the following elements: Date Pronounced Dead

HL7 CDA ® Release 2 Implementation Guide: Reporting to Public Health Cancer Registries from Ambulatory Healthcare Providers, Release 1, DSTU Release 1.1 – US Realm: https://www.hl7.org/implement/standards/product_brief.cfm?product_id=398. SHOULD for the following elements: Date Pronounced Dead

IHE Quality, Research and Public Health Technical Framework Supplement – Vital Records: https://www.ihe.net/uploadedFiles/Documents/QRPH/IHE_QRPH_Suppl_VRDR.pdf

Vital Records Death Reporting FHIR Implementation Guide 1.0: http://build.fhir.org/ig/HL7/vrdr/

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
Supporting Artifacts Comment Level – in limited test environment or pilot.

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 electronic death registration vendors (EDRS) and NCHS. IHE Connectathon: Found in 'New Search', filter by 'Select an integration profile = Vital Records Death Reporting', https://connectathon-results.ihe.net/view_result.php?rows=company&columns=actor&title=integration_profile

HL7 FHIR Connectathon results (Sept 2019 and 2020): Death reporting - tested between EDRS to EDRS (2019) and EDRS to NCHS (2019, 2020). https://confluence.hl7.org/display/FHIR/2020-09+Public+Health+Track.

ForeCare EHR Vendor found within their integration profile. https://product-registry.ihe.net/PR/pr/search.seam?integrationProfile=399&domain=9&date=ANY|1601322328634|160132232863.
https://confluence.hl7.org/display/FHIR/2020-09+Public+Health+Track
Number of organizations/individuals with which this data element has been electronically exchanged 4
Supporting Artifacts 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. 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.

HL7 FHIR Connectathon results (Sept 2019 and 2020): tested between (5 -7) electronic death registration vendors (EDRS) and NCHS. https://confluence.hl7.org/display/FHIR/2020-09+Public+Health+Track.

NACCHO 360X Interoperability Demonstrations for Death reporting 2020 (FHIR) tested between EDRS and NCHS
https://connectathon-results.ihe.net/view_result.php?rows=company&columns=actor&title=integration_profile
Potential Challenges
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 When using FHIR there may be associated costs with the development of tools needed to access specific data. Often these costs may be a limitation for states who need to develop tools to access certain 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
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 Level 2 - Demonstrates exchange between 4 or more organizations with different EHR/HIT systems
Breadth of Applicability - # Stakeholders Impacted Level 2 - Used by a majority of patients, providers or events requiring its use

Comment

Submitted by nedragarrett_CDC on 2022-04-27

CDC's Consolidated Comment

NCHS/DVS Vital Records SME feedback - From the medicolegal death investigation perspective, vital records supports this element but recognizes that this is limiting info to determine certify a cause of death. A clinical death note may not be sufficient to determine cause of death.  Medical examiner and Coroner’s would conduct their own investigation and need the full medical record to complete death certification.

Submitted by nedragarrett_CDC on 2021-04-15

Cause of Death Information

• We would need to consider capturing this variable in order to support the following domain related to Paul Coverdell National Acute Stroke Program/American Hospital Association’s (AHA) Get With The Guidelines (GTWG). The goal is to reduce gaps in stroke care across the continuum of care in states with high burden populations. • The information captured from stroke patients and those who encounter mobility related issues and are at risk of multiple hospitalizations due to post-discharge complications can help in reducing the gaps in care and to plan quality improvement efforts. # Domain # of Variables Variable Details Required or Optional 1 Death 1 1. If patient died, cause of death. Required Use-Case Justification: The most challenging part is capturing the information post-hospital discharge for acute stroke patients. A lot of the pre-hospital care is captured through National Emergency Medical Services Information System (NEMSIS), a national database that stores EMS data from the U.S. States and Territories). The follow-up elements proposed above have been developed as a part of the Paul Coverdell National Acute Stroke Program (link provided below) and captured within EHR for submission into American Heart Association’s (AHA) Get With The Guidelines (GTWG) module. The ability to extract the follow-up encounter related dates would help with the identification of gaps in post-hospital discharge date for stroke patients and plan strategies for Quality Improvement efforts. https://www.cdc.gov/dhdsp/programs/stroke_registry.htm This field is for general comments on this specific data element. To submit new USCDI data classes and/or data elements, please use the USCDI ONDEC system: https://healthit.gov/ONDEC

USCDI_Version_2_Draft_Template for Comments_DHDSP_vFinal_04.14.2021_5.docx

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