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Why collect race and ethnicity data?

According to the US Department of Health and Human Services’ initiative, “achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequities, historical and contemporary injustices, and social determinants of health—and to eliminate disparities in health and health care.” Achieving this goal for patients with neurological diseases aligns with the AAN’s mission “to promote brain health for all.”

While race and ethnicity are social constructs and not biologically determined variables, these demographic markers are closely linked to negative health outcomes and must be considered to address the disparities in health care. Therefore, accurate collection of race and ethnicity data must be a core component in the delivery of all health care services. Accurate, complete patient race and ethnicity data facilitate a real understanding of health care disparities in neurological care, which in turn will help drive targeted interventions that will ultimately result in higher quality, equitable, and truly patient-centered neurological health care.

The AAN encourages neurology providers to take steps to advance race and ethnicity data collection for patients under their care. This toolkit is a practical guide for neurological practitioners and clinic staff to collect complete, accurate, high-quality race and ethnicity data to track and address disparities in neurological care.

For more information about the importance of this initiative, read "” in Neurology^®: Clinical Practice.

Engaging key stakeholders

To successfully implement the process changes needed to improve race and ethnicity data collection, this initiative must be viewed and communicated as a key strategic priority at your institution. Engagement of key stakeholders is the critical first step.

• Create a dedicated project for this work to ensure adequate time, budget, and resources are devoted.
• Consider naming a dedicated champion who will take ownership and lead this project. The champion should be someone who is respected in the practice and who has a strong motivation and commitment to racial justice and health equity.

Avoid the following practices when forming your project team:

• , or making these roles symbolic only without enough power to make change
• Underresourcing the champion role/initiative; the appropriate time and budget should be dedicated to this work.
• Making the role an unofficial one for a more junior team member, usually from an underrepresented group, so that their work is increased without proper compensation or support.
• Engaging team members as champions in this work solely due to their underrepresented backgrounds.

Ensure there is accountability for this work:

• Hold staff accountable for training completion
• Hold staff accountable for completeness of data collection
• Use a regular, data-driven audit process (see Technology and Informatics Considerations)

Learn more about best practices for building engagement and creating a project team from the American Medical Association’s STEPS Forward toolkit, “.”

Training and educating staff

This initiative will require training for all staff who will be collecting race and ethnicity data from patients, including front-end staff and clinicians. The following materials may be used to provide this training.

Additional AAN resources:

• AAN Anti-racism ºÃÉ«ÏÈÉú Program

Creating a welcoming environment for patients

Creating a welcoming, safe space for patients who visit your clinic or institution will help them feel comfortable sharing their race and ethnicity information. Consider the following environmental factors that may affect patients’ comfort levels:

• What media is playing in your waiting room? What reading materials are available?
• What marketing materials are you using both in and outside your office?
• Do the other elements of your office space (e.g., layout of the space, furniture, signage, artwork, or children’s toys) indicate that your practice is a safe, accessible, and inclusive space for all patients?

This initiative warrants creating dedicated marketing materials.

• Create print and digital materials targeted appropriately to your patient population.
• Leverage your patient portal to inform patients about this project. Promote the initiative in your portal newsletter and on the portal landing page.

When thinking about the television or radio stations playing in your office, the magazines available for your patients, and your marketing materials, consider:

• Who is depicted in these sources?
• Are they representative of your patients?
• Do the views expressed reflect the views of your practice or the views that you feel are shared by your patients?

Technology and informatics considerations

Successfully improving race and ethnicity data collection at your institution will require an audit of your information technology capabilities.

Ensure that all internal systems have consistent, multiselect, race, and ethnicity options.

• Consider using as the initial options for race (White, Black, American Indian/Alaska Native, Asian, and Native Hawaiian or Other Pacific Islander) and ethnicity (Hispanic or Latino and Not Hispanic or Latino).
  • Please note that on March 28, 2024, the OMB released a recommendation to combine race and ethnicity into a combined classification and to add a new category of North African or Middle Eastern. EHR vendors are still in the process of implementing these recommendations and there may be a disconnect between the OMB general category list and the Office of the National Coordinator (ONC) United States Core Data Interoperability V3 standard.
• Allow for more granular options as a subsequent selection, with these more granular options mapped back to the broader OMB categories. This will enable your patients to better identify themselves and for your practice to identify targeted interventions to provide high-quality, patient-centered care.
  • The Assistant Secretary for Technology Policy’s combines the OMB’s categories with census categories and is an excellent source for additional granular options.
  • Some electronic health vendors have a discrete field for Ethnic Background. This field can be used to capture additional information about the patient’s background (such as Ashkenazi ethnicity) without impacting reporting of the base OMB ethnicity categories.
  • Think about the local patient population you serve when considering what additional options to include for your second-level selections. While a greater number of options will help ensure your full population is represented, having too many options can make the system difficult for your patients and staff to navigate.
  • If your practice is in an area with a large Native American population, you will need to evaluate the Indian Health Service’s requirements for data collection and reporting.
• Before making any modifications to your electronic health record (EHR) system, consider reaching out to your vendor to learn what is on their roadmap in this space and to ensure that any changes will not impact interoperability.
• Race and ethnicity are distinct fields (and concepts) from preferred language. A preferred language should not be assumed based on a patient’s response to an ethnicity question (and vice versa).

Evaluate and modify the language used in your patient portal and check-in prompts.

• Most EHR vendors now have both a patient portal that supports pre-check-in and a kiosk platform for check-in. These platforms support the collection of race and ethnicity data and the language used in prompts should be configured thoughtfully (see Training and Educating Staff for language considerations).
• Many portals also support the ability to send out bulk messages to patients. These can be used to ask them to review and update their race and ethnicity information if it is not accurate or complete.

Use reports and dashboards to monitor progress and promote accountability.

• Many EHR vendors have out-of-the-box . These can be used to understand the race and ethnicity breakdown of your practice population and better identify inequities in care—such as those related to access, resource needs, and health outcomes—and to help drive targeted interventions. These reports can also be used to track the completeness of race and ethnicity data collection. These reporting tools can drill down to different divisions, subspecialties, or staff levels in your institution to inform the need for targeted feedback or education of specific staff.
• In partnership with your vendors, consider resetting (deleting) all unknown (6 months) and decline to answer (one year) responses at routine intervals. This will help prompt these questions to be asked again if these responses were input inaccurately and provide the opportunity to re-engage patients if they had previously declined.

Some EHR vendors have dedicated focus groups that are tackling ways to improve functionality around race and ethnicity data collection in their systems. These are great opportunities to get engaged in this important work.