Social History

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).

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.

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).

CDC's Consolidated Comment for USCDI v4

CDC continues to recommend inclusion of this high priority data element in USCDI v4

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 

• Several analyses have been conducted using electronic health data (although relevant ICD codes are non-reimbursable and therefore inconsistently used) or working with state level or facility-level data that is of higher quality.  Analyses included severity of disease, infection rates, and mortality of disproportionately affected populations living in congregate settings due to COVID-19.  Other reports included outbreak investigations within specific facilities.  Links to select references are as follows: Hospitalizations for COVID-19 Among US People Experiencing Incarceration or Homelessness | Infectious Diseases | JAMA Network Open | JAMA Network, Assessment of SARS-CoV-2 Infection Prevalence in Homeless Shelters — Four U.S. Cities, March 27–April 15, 2020 | MMWR (cdc.gov); Race/Ethnicity, Underlying Medical Conditions, Homelessness, and Hospitalization Status of Adult Patients with COVID-19 at an Urban Safety-Net Medical Center — Boston, Massachusetts, 2020 | MMWR (cdc.gov); Rapid Spread of SARS-CoV-2 in a State Prison After Introduction by Newly Transferred Incarcerated Persons - Wisconsin, August 14-October 22, 2020 - PubMed (nih.gov); Morbidity and Mortality Among Adults Experiencing Homelessness Hospitalized With COVID-19 | The Journal of Infectious Diseases | Oxford Academic (oup.com) 

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.