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We Can't Fix Inequities in Healthcare If We Don't Fix How We Measure Them-The HSB Blog 2/21/22

Our Take:

Lack of available and high-quality health data for black, indigenous, and people of color (BIPOC), as well as language barriers in healthcare settings, will make it impossible to reduce racial disparities in healthcare unless these issues are resolved. Not only is this type of data essential for ensuring quality care for everyone, but these hurdles are a reflection of system inequities and the ongoing disconnect between providers and patients of different backgrounds that desperately need to be addressed. However, while challenges surrounding accountability for improved data collection and analysis around BIPOC populations continue to persist, efforts to improve these initiatives and dismantle these disparities are on the rise as evidenced by including such efforts in quality measurement scores. This is a start, but more needs to be done.

Key Takeaways:

  • According to HEDIS data in 2019, an astounding 94% of commercial health plans reported incomplete ethnicity data

  • The Healthcare Effectiveness Data and Information Set (HEDIS) holds plans responsible for addressing gaps in treatment and outcomes among their patient populations

  • Blacks were almost twice as likely to have undiagnosed kidney disease as Whites according to “Racial and Ethnic Disparities of Chronic Medical Conditions in the USA”

  • Barriers to effective and equitable healthcare can result from social, cultural, and linguistic differences between patients and clinicians

The Problem:

Persistent racial and ethnic disparities within our healthcare system and the inability to get solid data around the sources and impacts of these challenges have impeded our ability to understand how certain social determinants of health (SDOH) affect the quality of healthcare and health outcomes. These SDOH which the CDC defines as “conditions in the places where people live, learn, work, and play that affect a wide range of health and quality-of life-risks and outcomes” can have profound impacts on the health and effectiveness of certain treatment protocols. For example, according to the Robert Wood Johnson Foundation, SDOH can drive as much as 80% of health outcomes. Although acknowledgment of basic acknowledgment of these factors is increasing, the policy maker’s ability to understand specifically what created and factored into such issues is still in its nascent stages. For example, although the historic lack of effort and resources put forth to examine and address such disparities is one factor, understanding how and why specific geographic regions vary in levels of disparities in care is equally as important. For example, the efforts of many states to collect and analyze the impact of COVID on communities of color has been a meaningful step. Prior to that, there were inconsistent policies in state collection of racial and ethnic data and classifications around illnesses and diseases. Prioritizing the collection of valid and accurate data from all racial and ethnic groups will aid in understanding the missteps and limitations in the data that’s collected. Furthermore, many communities' language barriers or cultural differences often factor into the lack of data collection and analysis. For example, many racially and ethnically diverse populations are not able to participate in research that is only being undertaken in a limited number of languages, limiting their ability to understand the purpose of the research and preventing them from understanding the importance of their participation and data in the research. Reaching out in their own language, and explaining the purpose, benefits, and importance of data collections could help. Along these lines, addressing the regulations and standards governing the collection of data around racial and ethnic populations, known officially as the Standards for the Classification of Federal Data on Race and Ethnicity, is sorely needed as these standards were last updated almost 25 years ago.

The Backdrop:

In order to understand the differences in health outcomes for diverse populations, it is necessary to advocate for reliable and valid resources to conduct research and examine data to draw conclusions and make policy recommendations. Unfortunately, the lack of reliable, high-quality data, inadequately updated data standards, and an inability to collect culturally relevant data have led to a void of effective answers. Healthcare organizations first need to be able to identify any disparities that exist in particular populations as well as why they exist before being able to address them. For example, if the community being examined is a diverse Black or Latino population, understanding the type of barriers that exist to provide additional services and resources would improve the ability to steer resources and treatment to their needs. In addition, attitudes towards the healthcare system and sources of health information could decrease the difficulty associated with recruiting the various populations into research studies which could increase the diversity of such studies and acceptance of their conclusions.

It is also important to note the impact that changes in economic conditions can have on such communities over time. Certain communities may be more sensitive to small changes in economic conditions as they often live with a much smaller safety net than other populations. For example, the Pandemic caused striking and greater shifts in financial conditions and quality of life for many in the BIPOC community as compared with white adults. According to “Disparities in Health and Health Care: 5 Key Question and Answers”, “about six in ten Hispanic adults (59%) and about half of Black adults (51%) said their household lost a job or income due to the pandemic, compared to about four in ten White adults (39%)”. In addition, diverse and underserved populations typically experience a higher prevalence of undiagnosed diseases compared to white populations. For example, in a study entitled “Racial and Ethnic Disparities of Chronic Medical Conditions in the USA”, the authors noted “all minorities were more likely to have undiagnosed diabetes compared to Whites” and “Blacks were almost twice as likely to have undiagnosed kidney disease as Whites”.

Identifying and diagnosing these problems will become increasingly important as people of color become an increasing portion of the population given that people of color are forecast to make up more than half of the population by the year 2050. To better adapt healthcare resources, advocacy for and communication with these targeted populations is necessary. While historically healthcare interventions may have fallen short due to the lack of good data and the inability to effectively design strategies that would benefit these populations, as people of color grow demographically, healthcare equity needs to be the top priority for social, economic, and humanitarian reasons as untreated disease strains challenge us ethically as well as fiscally. Leveraging resources rolled out during the Pandemic like the CDC COVID Data Tracker or Emory University; COVID-19 Health Equity Interactive Dashboard to better collect and disseminate granular health data on BIPOC populations could strengthen connections and instill trust in those communities.


The need for interventions to target gaps in health data and in care for minority populations is vital as is the need for sustainability of these initiatives. Quality measurement systems have been one method of encouraging health care systems to fill the information void where data on current disparities exist. For example, the National Committee for Quality Assurance (NCQA) has started “implement[ing] a stratification by race and ethnicity in its health plan quality measure set, the Healthcare Effectiveness Data and Information Set (HEDIS), to hold plans accountable for addressing disparities in care and outcomes among their patient populations.” This is due to the fact that according to HEDIS data in 2019, an astounding 94% of commercial health plans reported incomplete ethnicity data. This demonstrates how incomplete information on inequities in healthcare data is and as such how difficult it would be to address issues within this data even if they are measured. Nevertheless, when providers and health plans have been able to measure such data and take action to address it they have found success. For example, when health plan Health Net, LLC put forth efforts to combine patient-level data, provider data, and public mapping information in order to improve the rates of Mandarin-speaking Chinese members to encourage them to get their cervical cancer screenings, there was a 4% increase in the cancer screening rates.

While improved data collection and analysis will help address disparities, it will take time. In the meantime policy officials, providers and plans should explore other approaches near-term. Multilevel interventions that encompass individual patients, family and friends, organizations and providers, and policy and stakeholders may be an effective method to see a shift in the healthcare system. The Centers for Population Health and Health Disparities have developed several multilevel interventions to bridge gaps in access to quality of services for cardiovascular disease and cancer. In addition, language and communication barriers also need to be addressed in order to improve the care given from provider to patient. It is critical for providers and healthcare systems to recognize that populations who are culturally and linguistically diverse need communication solutions to better the overall experience when dealing with clinicians. While delivering culturally competent care means more than just translating something written in English just implementing language translation can be a step in the right direction. For example, one study showed that the use of online translation tools such as Google Translate and MediBabble in hospitals and clinics “increased the satisfaction of both medical providers and patients…and improved the quality of healthcare delivery and patient safety.” Achieving high-quality care for diverse populations will be an effective means in treatment and satisfaction of medical providers and patients. However, it will not be complete until we measure, analyze and address care in a culturally competent manner. According to the American Hospital Association, this will require acknowledging the importance of culture, incorporating the assessment of cross-cultural relations, recognizing the potential impact of cultural differences, expanding cultural knowledge, and adapting services to meet culturally unique needs.

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