Clinical Notes

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.