Data Element
Congregate Living
Description
Shared housing includes a broad range of settings, such as apartments, condominiums, student or faculty housing, national and state park staff housing, transitional housing, and domestic violence and abuse shelters
Submitted By: Nedra Garrett / CDC
Data Element Information
Data Element Description Shared housing includes a broad range of settings, such as apartments, condominiums, student or faculty housing, national and state park staff housing, transitional housing, and domestic violence and abuse shelters
Use Case Description(s)
Use Case Description This data element in used in 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.

Specific to this data element:

Shared housing includes a broad range of settings, such as apartments, condominiums, student or faculty housing, national and state park staff housing, transitional housing, and domestic violence and abuse shelters. Special considerations exist for the prevention of infectious diseases in shared housing situations.

People living and working in this type of housing may have challenges with social distancing to prevent the spread of infectious diseases. Shared housing residents often gather together closely for social, leisure, and recreational activities, shared dining, and/or use of shared equipment, such as kitchen appliances, laundry facilities, stairwells, and elevators.

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 CDA® R2 Implementation Guide:C-CDA
Estimate the breadth of applicability of the use case(s) for this data element 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
Healthcare Aims
  • Improving the health of populations
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) HL7 CDA: C-CDA Characteristics of Home Environment template

HL7 FHIR: US Public Health Characteristics of Home Environment

LOINC: 75274-1 "Characteristics of residence"

Value set: https://vsac.nlm.nih.gov/valueset/2.16.840.1.113883.11.20.9.49/expansion (Residence and Accommodation Type)

https://loinc.org/75274-1/ https://vsac.nlm.nih.gov/valueset/2.16.840.1.113883.11.20.9.49/expansion https://www.hl7.org/implement/standards/product_brief.cfm?product_id=519 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=436
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 CDA® R2 Implementation Guide:C-CDA
HL7 CDA: C-CDA Characteristics of Home Environment template

HL7 FHIR: US Public Health Characteristics of Home Environment
Current Use Extensively used in production environments
Supporting Artifacts C-CDA (HL7 CDA® R2 Implementation Guide: Consolidated CDA Templates for Clinical Notes - US Realm)

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

http://www.hl7.org/implement/standards/product_brief.cfm?product_id=492 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=519 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=436
Extent of exchange 5 or more. This data element has been tested at scale between multiple different production environments to support the majority of anticipated stakeholders.
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.

C-CDA (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 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=519 https://www.hl7.org/implement/standards/product_brief.cfm?product_id=436
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.
ASTP Evaluation Details
Each submitted Data Element has been evaluated based on the following 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
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 1 - Data element is captured, stored, or accessed in at least one production EHR or HIT module.
Criterion #3
Maturity - Current Exchange		 Level 1 - Data element is electronically exchanged between two production EHRs or other HIT modules using available interoperability standards.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 0 - Use cases apply to a limited number of care settings or specialties, or data element represents a specialization of other, more general data elements.
Evaluation Comment This data element represents a component of a specific domain (Housing) of Social Determinants of Health.

Comment

Submitted by minigrrl on

What is the justification…

What is the justification for the demotion of the following Case Reporting data elements in USCDI, specifically:

• Exposure/Contact Information: Exposure/Contact Agent
• Exposure/Contact Information: Exposure/Contact Date
• Exposure/Contact Information: Exposure/Contact Direction
• Exposure/Contact Information: Exposure/Contact Source/Target Participant
• Exposure/Contact Information: Exposure/Contact Type
• Health Insurance Information: Medicare Patient Identifier
• Immunizations: Vaccination Administration Date
• Laboratory: Specimen Collection Date/Time
• Patient Demographics/Information: Patient Birth Place
• Patient Demographics/Information: Tribal Enrollment
• Pregnancy Information: Estimated Date of Delivery
• Pregnancy Information: Gestational Age
• Pregnancy Information: Last Menstrual Period (LMP)
• Provenance: Unique Identifier
• Social Determinants of Health: Housing Instability and Homelessness
• Social History: Congregate Living
• Work Information: Employment Status
• Work Information: Job Employer Address
• Work Information: Job Employer Name
• Work Information: Usual Industry
• Work Information: Usual Occupation

Currently, 21 certified EHR products exchange these elements using electronic Case Reporting (eCR) specifications demonstrating real-world adoption that typically supports promotion, not demotion, within the USCDI maturity model.

Collectively, these elements provide clinical, demographic, occupational, social, and epidemiological context essential to disease investigation and outbreak response for nationally notifiable conditions.

We urge ONC to either reverse this decision or publish a detailed, evidence-based rationale.

Submitted by CDC_DSMH_WG on

CDC's comment on behalf of CSTE for USCDI v5

CSTE supports advancing structured collection of data on whether the patient resides in a congregate residential facility. Key values would include long-term care facility, assisted living facility, correctional facility, homeless shelter, group home, university dormitory, other congregate residential facility. Rapidly identifying cases of infectious disease that reside in such settings can greatly aid in rapid public health intervention in facilities serving vulnerable populations by state, tribal, territorial and local health departments to reduce transmission and prevent further morbidity and mortality due to infectious diseases (e.g., for influenza, RSV, COVID-19, Neisseria meningitidis, foodborne pathogens, norovirus and others).

Submitted by CDC_DSMH_WG on

CDC's Consolidated Comment for USCDI v5

  • We provide recommendation for a core set of priority SDOH coded terminologies be required in USCDI v5. This core set is needed in order for these elements to be included in standard build for improved data capture and interoperability. These should be separate from the current four SDOH elements (of assessment, goals, interventions and problems) which represent broad categories and allow optionality of hundreds of coded terminologies. The base set of required SDOH international standard data elements (coded terminologies) will advance priority SDOH initiatives of the White House, department and agency missions, for partners and the public, and within the clinical setting. They are aligned with policy, programs, and evaluation and clinical tools for improved data assets and evidenced based decision-making benefiting patients and populations. 
  • NACCHO Supports CDC's comment.

Submitted by CDC_DSMH_WG on

CDC's comment on behalf of CSTE for USCDI v4

CSTE Comment:

  • CSTE supports advancing structured collection of data on whether the patient resides in a congregate residential facility. Key values would include long-term care facility, assisted living facility, correctional facility, homeless shelter, group home, university dormitory, other congregate residential facility. Rapidly identifying cases of infectious disease that reside in such settings can greatly aid in public health intervention by state, tribal, territorial and local health departments to reduce transmission and prevent further morbidity and mortality (e.g., for influenza, RSV, COVID-19, Neisseria meningitidis, foodborne pathogens, norovirus and others).

Submitted by CDC_DSMH_WG on

CDC's Consolidated Comment

Applicable standards: HL7, LOINC, SNOMED 

 

  • The “congregate living” data element is highly valued by CDC as it measures factors that drive health outcomes of priority populations. The conditions in which we are born, live, learn, work, play, worship, and age – known as social determinants of health – have a profound impact on health. They influence the opportunities available to us to practice healthy behaviors, enhancing or limiting our ability to live healthy lives. High-risk congregate settings benefit from prevention, intervention and focus to improve health outcomes for individuals and communities. 

Data Collection Use Cases 

  • An example of CDC use of “congregate living” is for the COVID-19 Response. Data are used for development of guidance, assessment of needs among populations at disproportionate risk, and monitoring health disparities over time allowing better care and outcomes across the nation. Such guidance and tools help owners, administrators, or operators of shared housing facilities make decisions to protect residents and staff. Information using congregate data is provided publicly on the COVID Data Tracker (e.g. COVID-19 cases and deaths in US correctional and detention facilities), which has had more than 287M page view since April 2020, leveraging its use broadly among partners and the public. CDC also worked with National Healthcare for the Homeless Council to produce a cobranded dashboard of COVID-19 testing and vaccination among shelters serving people experiencing homelessness (https://nhchc.org/covid-dashboard/).  The data behind both of these dashboards are currently collected by web-scraping and/or crowd-sourcing since these data are not available via more traditional surveillance systems.  However, these populations in congregate settings are at high risk for infectious disease outbreaks as well as higher rates of chronic disease.   
  • Information about congregate living is collected through routine case-based surveillance of tuberculosis (TB), viral hepatitis, sexually transmitted diseases (STDs) and HIV, largely to document history of or current homelessness and/or incarceration. Persons experiencing homelessness account for 4.3% of reported TB cases and contribute an estimated incidence of 36 cases per 100,000 persons. As HIV infection is three times higher among persons in state and federal prisons, and TB infection 6 times higher among persons in jails or federal prisons than the general population, specificity about congregate living setting, especially type of incarceration, is of particular interest for HIV and TB. Standardization of congregate living and additional specification for different congregate settings in electronic health records through adoption of USCDI standards will enable more accurate collection of these important data, potentially without time-consuming patient interviews. The standardization, in turn, can improve patient care and health outcomes. 

 

 

Electronic Health Record Data Analysis Use Cases 

Data Element Recommendations 

  • Fine-tuning the value sets would be important to increase the value of this data element by focusing on options that are most relevant to clinical care and public health.  Expansion of the data element to include the spectrum of housing situations (e.g., long-term care facility, correctional facility-related response options, experiencing homelessness (sheltered or unsheltered, residential treatment facility) will allow better use and implementation. More granular response options to represent facility and population (e.g. persons in local jails, persons in state prisons, persons in federal facilities, persons in other detention facility, persons in juvenile detention, etc.) is also required for use in public health. The above factors are important at the point of care for follow-up and connection to needed supportive services, at the local level to identify sites with potential need for outbreak investigation and response, and also in the public health realm to create data dashboards and to perform analyses such as those referenced above.  Currently, these dashboards are populated by crowdsourcing or web-scraping due to lack of information from traditional data streams and surveillance systems.  In addition, analyses looking into infection rates of infectious diseases, vaccination rates, hospitalization and mortality would be more representative and produce a stronger evidence base to address the health needs of disproportionately affected populations. Better quality data would provide a much stronger evidence base for efforts to improve health equity for populations at disproportionate risk.  
  • For example, for tuberculosis case reporting, residence within a correctional facility or long-term care facility are required data elements, and the proposed value sets do not contain the level of detail needed for the case reports. Additionally, a number of variables within the proposed value sets may provide superfluous information (e.g., living on a boat, lives with partner, home well personalized) and complicate data collection. A value set with more discrete response options may improve use.   

CSTE Comment:

  • CSTE supports advancing structured collection of data on whether the patient resides in a congregate residential facility. Key values would include long-term care facility, assisted living facility, correctional facility, homeless shelter, group home, university dormitory, other congregate residential facility. Rapidly identifying cases of infectious disease that reside in such settings can greatly aid in public health intervention by state, tribal, territorial and local health departments to reduce transmission and prevent further morbidity and mortality (e.g., for influenza, RSV, COVID-19, Neisseria meningitidis, foodborne pathogens, norovirus and others).  If this variable is not yet ready for inclusion in v3, we strongly recommend development of standards and inclusion in USCDI v4.

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