AHIP Envisions Race, Ethnicity Data Collection Standardization Improvements

AHIP has introduced race and ethnicity data collection standardization recommendations for demographic data collection with the aim of empowering health equity efforts nationwide.

“Robust, accurate, actionable, and standardized demographic patient data is fundamental to advancing health equity,” the letter from Matt Eyles, president and chief executive officer of AHIP, started.

“We applaud the data collection efforts that currently exist across the federal government, states, and accreditation requirements. However, we believe these could be enhanced with improved demographic data standards that are consistent and aligned across the health care industry.”

Eyles noted a number of problems with the current data standards, as exhibited by the 2020 census, the 2011 HHS recommendations in the Affordable Care Act, and the OMB and CMS standards. The issues included insufficient options for identifying ethnicity and race, lack of regional customizability, lack of appropriate subcategories, lack of an option to opt out, and varying data collection standards.

In order to improve data collection alignment and processes, AHIP brought together payers, providers, patient representatives, and other stakeholders and, over the course of 18 months, this group outlined the goals of reinventing demographic data standards and offered its own suggestions.

The goals were to align and improve national demographic data standards, standardize data and data collection without sacrificing customizability, and reducing data burden.

Eyles noted that these efforts were essential not only for health equity’s advancement but also for interoperability efforts.

“Having interoperable patient demographic data would allow the health care ecosystem to collect this data when most appropriate and convenient for the patient and share the information with other partners with patient consent to inform patient care and population health management efforts as well as to more effectively address disparities in access to care and outcomes,” the letter stated.

To this end, the payer organization created a map of the standardized codes along with guidance for how to ask and code demographic questions.

Additionally, Eyles remarked that if the changes only occurred on a volunteer basis, the change would not be pervasive enough to make a difference. As a result, he listed out several recommendations to achieve more widespread alignment, such as including these standards in CMS original Medicare and Medicare Advantage plan enrollment materials and in NCQA accreditations.

The AHIP recommendations included 20 granular options for individuals who identified as Hispanic or Latino as well as a customizable “Other” option. The higher-level standardized reporting question offered seven race options and allowed respondents to choose multiple answers.

The granular option for the race question included 13 to 14 granular responses for each of the six general racial categories:

• Black or African
• Asian
• Native Hawaiian or Pacific Islander
• White or European
• Arab, Middle Eastern, or North African
• Native American, Indigenous, or Alaska Native

Each granular category in the race question also included a customizable option at the end of each category.

The language preference questions for paper forms or paper health risk assessments and healthcare settings each covered over 20 possible languages including sign language.

The sexual orientation question encompassed six options including “something else, please specify” and “don’t know,” with definitions for almost every category. The gender question added the option to answer “intersex.”

The disability status question requested information on activities that present challenges for respondents and allowed respondents to identify as having hearing, vision, cognitive, ambulatory, self-care, independent living, communication, or other functional limitations.

The mind, body, spirit questions allowed respondents to identify one of 17 belief systems including agnosticism and atheism, “nothing in particular,” and “something else” with the opportunity to specify.

“An aligned and standardized approach to interoperable demographic data will empower the health care ecosystem to collaborate on shared health equity goals, measure progress towards those goals, and better serve individuals and communities,” Eyles concluded.

“With consistent and interoperable data standards, great strides can be made in reducing inequities and addressing social drivers of health while improving outcomes and minimizing the data burden placed on individuals and on the larger health care ecosystem.”

Separately, studies have indicated that payers can improve race and ethnicity data collection by boosting consumer trust and community engagement, correcting employers’ perceptions legal landscape around sharing race and ethnicity data, improving data collection processes, and bolstering organizations’ capacity for race and ethnicity data collection.