Practical Applications: Collection and Sourcing Considerations

Applying equity-centered approaches to data collection and sourcing

1. Ensure all facilities submit data on a regular basis.
Consistent, daily data from all participating facilities helps syndromic surveillance programs monitor and understand health outcomes and disparities trends with fewer qualifications. Monitor daily facility submissions and promptly resolve interrupted data feeds. If a facility stops submitting data, site administrators should communicate with that facility to investigate problems and identify potential corrective actions. Identify and address patterns of incomplete or inaccurate demographic data. If certain facilities experience recurrent data submission issues, site administrators can provide technical assistance to improve participation.

2. Routinely review demographic data completeness as part of ongoing data quality checks.
Site staff should check the completeness of demographic data as part of their routine data quality procedures. They should aim to improve the percent complete for each demographic variable, including age, race and ethnicity, gender and ZIP code. In addition, site staff should note when the percent complete drops and proactively reach out to their facilities to investigate problems and identify potential corrective actions. Consider adopting a "completeness report card" to monitor how completeness compares to other facilities in the area, the previous month or quarter, and a similar period in the previous year. Site administrators can share this information with facilities to maintain an open and constructive feedback loop and improve demographic data completeness.

3. Identify facilities not participating in your syndromic surveillance program.
Each site should create a comprehensive list of facilities in its public health jurisdiction and their syndromic surveillance participation status. Actively onboard facilities and work toward a goal of 100% of all facilities submitting data. Sites may prioritize recruiting and onboarding facilities that provide services to communities that are medically underserved. Investigate if there are certain populations served by non-participating facilities that may lead to misrepresentation of that population in the data. For example, if a non-participating facility serves 50% of populations experiencing homelessness in your jurisdiction, your data do not accurately represent the full scope of health needs for that population. Based on your program's capacity, conduct outreach to non-participating sites to identify barriers to participation.

4. Work with your health department and participating facilities to improve demographic data collection.
Identify efforts to increase demographic representation in public health and healthcare data and then promote syndromic surveillance to document challenges and best practices to the collection of demographic data. Syndromic surveillance programs can take advantage of the increased prioritization of health equity in health departments across the country. Understanding how patients report and clinicians collect data in emergency departments can highlight areas of improvement and potential solutions, including evaluating the demographic categories that patients can select, utilizing methods to validate data with the patient and implementing approaches to handle incomplete demographic information. Explore opportunities to expand the syndromic surveillance messaging guide to include additional demographic variable options. This can include standardizing analytical methods for classifying and using race and ethnicity data, documenting SOGI and disability data or capturing addresses or indicators for people experiencing homeless. Facilities, for example, can consider cross-referencing addresses with those of local homeless shelters, food pantries, or other locations commonly given as addresses by people experiencing homelessness in their community to validate and improve the data.

5. Identify and implement educational training on the importance of collecting accurate demographic information.
Many clinicians and hospital staff are not aware of how demographic data are used after it is collected in the patient's health record. Programs should proactively engage clinicians and educate them on the importance of demographic data for identifying health disparities and informing health equity efforts. Education should include best practices for culturally sensitive and inclusive data collection and examples of ways in which data are used and can be incorporated into quality improvement activities. Syndromic surveillance programs should collaborate with internal partners across the health department to identify education materials to support this process. When these data are used for health equity analyses, it is a best practice to communicate back to clinicians and hospital staff how the healthcare data collected were used to identify health disparities and take public health action.

Programs interested in engaging with local emergency clinicians and hospital staff to improve data collection for surveillance purposes can email nssp@cdc.gov to learn more about Project EMRge, which seeks to connect public health and emergency medicine.

6. Explore using Z code data to demonstrate value to clinicians, public health programs and the NSSP Community of Practice (CoP).

Many challenges still exist in capturing social determinants of health data in medical records, especially in the ED.1 Clinicians and other public health personnel may not know that Z codes exist or understand their value. Clinical priorities in busy emergency departments, lack of incentives, and insufficient education on the usefulness of Z codes may limit providers’ willingness and ability to collect the necessary information to code social determinants in discharge diagnoses. As a result, the discharge diagnosis variable may have complete data with respect to medical conditions and diagnoses but lack social determinant-specific information.

Z code data can provide insight into patient outcomes and improve the quality of care. Educate and encourage facility staff to record and improve data quality for ICD-10 Z codes. Standardizing the reporting of social determinants also enables clinicians and programs to tailor strategies to address community needs. Syndromic surveillance analysts should assess to what extent Z codes are recorded and seek to incorporate them, if appropriate, in analyses. Additionally, encourage emergency medical clinicians to consider using key terms in chief complaint codes to flag visits of interest, key populations, or conditions as long as there are appropriate safeguards for patient privacy. Visits of interest may include natural disasters or large local events and key populations may include individuals who are unhoused or recently incarcerated. Additional work is needed to standardize key terms for syndromic surveillance.