The Quest to Reduce Health Disparities in Congenital Heart Disease: Moving beyond Descriptions of Race-Based Outcomes


Despite medical and surgical advances in congenital heart disease (CHD), recent data has shown that racial/ethnic disparities in CHD mortality continue to persist throughout the lifespan.[1] For many years, the focus of health disparities in pediatric cardiology, particularly in the cardiovascular ICU, has been looking at differences in post-surgical hospital-based mortality for racial/ethnic minority populations. The evidence in this space has been equivocal, with some studies demonstrating an increased mortality for racial/ethnic minorities, and other studies showing no difference.[2,3] It may be that the differences seen between outcome studies are due to the primary focus being on race/ethnicity and hospital-based mortality (where levels of surgical expertise, regional differences, and referral patterns play a role). Other studies have moved beyond only looking at race/ethnicity and have assessed the impact of patient geography and socioeconomic factors on CHD hospital-based mortality.[4,5] These studies have found that access to care challenges (insurance type, region) may explain hospital mortality outcomes more so than race/ethnicity, making it clear that disparities in outcomes are multifactorial.

In order to improve long-term outcomes in patients with CHD throughout the lifespan, CHD research needs to expand its scope beyond in-hospital mortality as well as provide an interpretation of research findings that extends beyond the simple reporting of statistical significance due to race/ethnicity to explain health disparities.[6] Data has shown that outcomes negatively impacting poorer CHD populations occur once they leave the hospital.[7] Thus, there needs to be a move toward investigations that get at the root of these racial/ethnic disparities beyond the ivory tower and interventions to mitigate these disparities. Examining the impact of systemic racism, social determinants of health, health policy, institutional practices, implicit bias, and lack of representation of underrepresented minorities in cardiology and the ICU are important next steps to moving the needle to reduce health disparities.

Several strategies can be employed to this end:

  • Conduct research interventions that impact in and beyond the academic ivory tower and take into account systemic racism and social determinants of health.Systemic or structural racism are public policies, institutional practices, cultural representations, and other norms that work in various, often reinforcing ways to perpetuate racial group inequity.[8] Long-standing systemic racism in the United States has led to worse social determinants of health (SDOH- conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect health outcomes) among minority populations.[9] It has been stated that “ones zip code matters more than their genetic code”; in order to account for the impact that structural racism and SDOH have on health outcomes in CHD patients, one must identify and account for them. Data has shown that SDOH impact nearly every outcome throughout the CHD lifespan.[10] Thus, screening for social determinants of health from prenatal diagnosis, during a CVICU admission, and through to pediatric and adult CHD outpatient care will help give context to the ability to access care (including transportation for follow-up appointments), medication, healthy food, and the degree to which a neighborhood allows for post-operative rehabilitation (green space, safety, etc.). If concerns are raised regarding one of the SDOH, employing the assistance of social workers and financial counselors to provide resources is critical to improving outcomes and ensuring high quality CHD care.
  • Strategize data collection and health disparities research to advocate for health policies that improves lifelong care and reduces health disparities for CHD patients.Research and data shape local, state and federal health policies. Conducting research that includes race/ethnicity while considering the impact of other mediating and moderating SDOH and systemic inequities, as well as diving deeper to understand why inequities exist can in turn result in strategies to shape these policies. This research can in turn be used to advocate for increased state and federal funding to investigate health disparities in CHD. For example, increasing funding to explore the association between institutional CHD surgical volume, surgeon and ICU team experience, prenatal diagnosis, referral patterns of minorities to high mortality hospitals, and data transparency could make a huge impact in policies surrounding healthcare delivery that may mitigate health disparities. Beyond the ICU, increasing funding to explain the mechanism behind the association of socioeconomic status, educational level, and increased prevalence of CHD as well as worse fetal brain development or research that demonstrates the benefit of reimbursement for and funding of transition education for maintenance of CHD care given that the US has the highest discontinuity between pediatric and adult care, and that the Affordable Care Act has not eliminated racial/ethnic disparities in CHD outcomes.[11-15]
  • Implement quality improvement initiatives and research that addresses institutional practices to combat implicit bias and reduce health disparities.Everyone, including health professionals, has implicit biases (specific attitudes towards people or associating stereotypes with them without one’s conscious knowledge).[16] These biases can affect healthcare professionals in many ways, including patient-clinician interactions, hiring and promotion, and their own interprofessional interactions. These biases are not solely racially/ethnically based, but can include bias toward different sexes, LGBTQ individuals, or persons with disabilities. Mitigating implicit bias is a long-term goal requiring constant attention and repetition – having institutional policies that train physicians and other healthcare workers to identify and continually reevaluate their implicit biases is key to reducing health disparities.[17] Additionally, evaluating and restructuring institutional policies on teachings that misrepresent race and propagate physician bias in medical students and trainees is critical.[18] Teaching and research policies need to emphasize that race is not a biologic category based on innate differences that produce unequal health outcomes, but rather, is a social category that reflects the impact of unequal social experiences on health.[19] Finally, moving beyond cultural competency and diversity initiatives to implementing a quality improvement framework that prioritizes an institutional and ICU culture of equity, inclusion and belonging is key to ensuring representation of marginalized groups in leadership and the workforce, which in turn works to reduce health disparities for the populations they serve.[20]
  • Increase representation of underrepresented minorities in cardiology and ICU, and efforts to mitigate racism in academia.The most current data we have demonstrates that only 7.8% of practicing pediatric cardiologists are underrepresented minorities (URMs- Black, Hispanic, American Indian/Alaskan Native/Pacific Islander).[21] While no published data exists surrounding the number of URMs in pediatric cardiac ICU, data shows that URM critical care fellows constitute only 3.9% Blacks, 8.4% Latinos, and 0.3% American Indian/Alaskan Native/Pacific Islander.[22] Lack of workforce diversity has detrimental effects on patient outcomes, access to care, and patient trust, as well as on workplace experiences and employee retention.[23] Lack of workforce diversity means that URM parents in the ICU may feel unable to advocate for themselves and uncomfortable to express their opinion for fear of being stereotyped or labeled as “angry” or “obstructionist” to the care for their child. They may feel that communication is suboptimal and that their voices are ignored or unheard by the medical team.[24] Given the low numbers of URM faculty and trainees, having policies in place that allow for experienced URM patient advocates to assist parents in these high stress situations could help mitigate health disparities in the ICU. Ensuring real time translators are present for rounds so that non-English speaking parents may participate, as well as ensuring consent forms and written/online information are at an appropriate health literacy level is key to improving parental understanding of CHD risks/outcomes. Beyond this, applying a quality improvement framework and initiatives to increase workforce diversity can impact all levels of healthcare professionals, from the medical student pipeline, to trainees, to faculty.[25, 26]

Recommendations for increasing URM retention in academia exist, including engaging all faculty, not just URMs, in diversity efforts to begin to achieve health equity, and providing FTE and promotion pathways for diversity, equity and inclusion work.[27] Improving URM representation within academia is critically important in moving beyond descriptions of health disparities to implementing practices that reduce health disparities in the delivery of health care and initiatives to eliminate these health care disparities. Diversifying journal editors, abstract and manuscript reviewers in an effort to increase disparities-focused work and reduce the propagation of racist publications, diversifying grant reviewers to increase funding dedicated toward diversity-focused work, as well as diversifying leadership in associations/boards to improve dissemination and implementation of anti-racist publications and practices are all key to reducing health disparities in CHD populations.[28-30]


  1. Lopez KN, Morris SA, Sexson Tejtel SK, Espaillat A, Salemi JL. US Mortality Attributable to Congenital Heart Disease Across the Lifespan From 1999 Through 2017 Exposes Persistent Racial/Ethnic Disparities. Circulation. 2020 Sep 22;142(12):1132-1147. doi: 10.1161/CIRCULATIONAHA.120.046822. Epub 2020 Aug 3. PMID: 32795094; PMCID: PMC7508797.
  2. Oster ME, Strickland MJ, Mahle WT. Racial and ethnic disparities in post-operative mortality following congenital heart surgery. J Pediatr. 2011 Aug;159(2):222-6. doi: 10.1016/j.jpeds.2011.01.060. Epub 2011 Mar 17. PMID: 21414631.
  3. Peterson JK, Chen Y, Nguyen DV, Setty SP. Current trends in racial, ethnic, and healthcare disparities associated with pediatric cardiac surgery outcomes. Congenit Heart Dis. 2017 Jul;12(4):520-532. doi: 10.1111/chd.12475. Epub 2017 May 22. PMID: 28544396; PMCID: PMC5548594.
  4. Benavidez OJ, Gauvreau K, Jenkins KJ. Racial and ethnic disparities in mortality following congenital heart surgery. Pediatr Cardiol. 2006 May-Jun;27(3):321-8. doi: 10.1007/s00246-005-7121-4. PMID: 16565899.
  5. Gonzalez PC, Gauvreau K, Demone JA, Piercey GE, Jenkins KJ. Regional racial and ethnic differences in mortality for congenital heart surgery in children may reflect unequal access to care. Pediatr Cardiol. 2003 Mar-Apr;24(2):103-8. doi: 10.1007/s00246-002-0244-y. Epub 2002 Sep 25. PMID: 12360393.
  6. Ross PT, Hart-Johnson T, Santen SA, Zaidi NLB. Considerations for using race and ethnicity as quantitative variables in medical education research. Perspect Med Educ. 2020 Oct;9(5):318-323. doi: 10.1007/s40037-020-00602-3. PMID: 32789666; PMCID: PMC7550522.
  7. Anderson BR, Fieldston ES, Newburger JW, Bacha EA, Glied SA. Disparities in Outcomes and Resource Use After Hospitalization for Cardiac Surgery by Neighborhood Income. Pediatrics. 2018 Mar;141(3):e20172432. doi: 10.1542/peds.2017-2432. PMID: 29472494; PMCID: PMC5847092.
  8. Glossary for Understanding the Dismantling Structural Racism/Promoting Racial Equity Analysis. The Aspen Institute, Roundtable on Community Change. Accessed March 20, 2021
  9. Healthy People 2030: Social Determinants of Health. U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Accessed March 15, 2021
  10. Davey B, Sinha R, Lee JH, Gauthier M, Flores G. Social determinants of health and outcomes for children and adults with congenital heart disease: a systematic review. Pediatr Res. 2021 Jan;89(2):275-294. doi: 10.1038/s41390-020-01196-6. Epub 2020 Oct 17. PMID: 33069160.
  11. Miao Q, Dunn S, Wen SW, Lougheed J, Reszel J, Lavin Venegas C, Walker M. Neighbourhood maternal socioeconomic status indicators and risk of congenital heart disease. BMC Pregnancy Childbirth. 2021 Jan 21;21(1):72. doi: 10.1186/s12884-020-03512-8. PMID: 33478420; PMCID: PMC7819193.
  12. Lu YC, Kapse K, Andersen N, Quistorff J, Lopez C, Fry A, Cheng J, Andescavage N, Wu Y, Espinosa K, Vezina G, du Plessis A, Limperopoulos C. Association Between Socioeconomic Status and In Utero Fetal Brain Development. JAMA Netw Open. 2021 Mar 1;4(3):e213526. doi: 10.1001/jamanetworkopen.2021.3526. PMID: 33779746.
  13. Lopez, KN. Transitioning the Adolescent with Congenital Heart Disease: The Quest to Improve Long-Term Care. Expert Analysis. The American College of Cardiology, May 20, 2020. Accessed March 17, 2021.
  14. Moons P, Skogby S, Bratt EL, Zühlke L, Marelli A, Goossens E. Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis. J Am Heart Assoc. 2021 Mar 16;10(6):e019552. doi: 10.1161/JAHA.120.019552. Epub 2021 Mar 4. PMID: 33660532.
  15. Salciccioli KB, Salemi JL, Broda CR, Lopez KN. Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act. Birth Defects Res. 2021 Feb 15. doi: 10.1002/bdr2.1878. Epub ahead of print. PMID: 33590705.
  16. Implicit Bias. Perception Institute. Accessed March 5, 2021.
  17. Marcelin JR, Siraj DS, Victor R, Kotadia S, Maldonado YA. The Impact of Unconscious Bias in Healthcare: How to Recognize and Mitigate It. J Infect Dis. 2019 Aug 20;220(220 Suppl 2):S62-S73. doi: 10.1093/infdis/jiz214. PMID: 31430386.
  18. Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci U S A. 2016 Apr 19;113(16):4296-301. doi: 10.1073/pnas.1516047113. Epub 2016 Apr 4. PMID: 27044069; PMCID: PMC4843483.
  19. Amutah C, Greenidge K, Mante A, Munyikwa M, Surya SL, Higginbotham E, Jones DS, Lavizzo-Mourey R, Roberts D, Tsai J, Aysola J. Misrepresenting Race – The Role of Medical Schools in Propagating Physician Bias. N Engl J Med. 2021 Mar 4;384(9):872-878. doi: 10.1056/NEJMms2025768. Epub 2021 Jan 6. PMID: 33406326.
  20. A Roadmap for Promoting Health Equity and Eliminating Health Disparities: The Four I’s for Health Equity. National Quality Forum, September 14, 2017. Accessed March 3, 2021.
  21. Mehta LS, Fisher K, Rzeszut AK, Lipner R, Mitchell S, Dill M, Acosta D, Oetgen WJ, Douglas PS. Current Demographic Status of Cardiologists in the United States. JAMA Cardiol. 2019 Oct 1;4(10):1029-1033. doi: 10.1001/jamacardio.2019.3247. PMID: 31509160; PMCID: PMC6739735.
  22. Lane-Fall MB, Miano TA, Aysola J, Augoustides JGT. Diversity in the Emerging Critical Care Workforce: Analysis of Demographic Trends in Critical Care Fellows From 2004 to 2014. Crit Care Med. 2017 May;45(5):822-827. doi: 10.1097/CCM.0000000000002322. PMID: 28282303; PMCID: PMC5392161.
  23. Institute of Medicine (US) Committee on Institutional and Policy-Level Strategies for Increasing the Diversity of the U.S. Healthcare Workforce. In the Nation’s Compelling Interest: Ensuring Diversity in the Health-Care Workforce. Smedley BD, Stith Butler A, Bristow LR, editors. Washington (DC): National Academies Press (US); 2004. PMID: 25009857.
  24. Zurca AD, Wang J, Cheng YI, Dizon ZB, October TW. Racial Minority Families’ Preferences for Communication in Pediatric Intensive Care Often Overlooked. J Natl Med Assoc. 2020 Feb;112(1):74-81. doi: 10.1016/j.jnma.2019.09.005. Epub 2019 Oct 22. PMID: 31653328; PMCID: PMC7073286.
  25. Njoroge J, Rodriguez F, Albert MA. Dismantling Structural Discrimination in Cardiology Fellowship Recruitment. JAMA Netw Open. 2021 Jan 4;4(1):e2031473. doi: 10.1001/jamanetworkopen.2020.31473. PMID: 33427879.
  26. Rotenstein LS, Reede JY, Jena AB. Addressing Workforce Diversity – A Quality-Improvement Framework. N Engl J Med. 2021 Mar 25;384(12):1083-1086. doi: 10.1056/NEJMp2032224. Epub 2021 Mar 20. PMID: 33764706.
  27. Keila Lopez and Jean Raphael. Translating social justice into meaningful change for underrepresented minorities in academic medicine. Kevin MD blog, January 4, 2021. Accessed March 26, 2021.
  28. Retraction to: Diversity, Inclusion, and Equity: Evolution of Race and Ethnicity Considerations for the Cardiology Workforce in the United States of America From 1969 to 2019. Journal of the American Heart Association, August 6, 2020. Accessed March 10, 2021.
  29. Crist, Carolyn. JAMA Podcast on Racism in Medicine Faces Backlash. Web MD, March 5, 2021. Accessed March 10, 2021.
  30. Stevens KR, Masters KS, Imoukhuede PI, Haynes KA, Setton LA, Cosgriff-Hernandez E, Lediju Bell MA, Rangamani P, Sakiyama-Elbert SE, Finley SD, Willits RK, Koppes AN, Chesler NC, Christman KL, Allen JB, Wong JY, El-Samad H, Desai TA, Eniola-Adefeso O. Fund Black scientists. Cell. 2021 Feb 4;184(3):561-565. doi: 10.1016/j.cell.2021.01.011. Epub 2021 Jan 26. PMID: 33503447.

Keila N Lopez, MD, MPH

Associate Professor, Pediatrics
Director, Transition Medicine
Division of Pediatric Cardiology
Texas Children’s Hospital / Baylor College of Medicine
Houston, TX