Out of Committee: Outcomes Research and Evidence-Based Medicine | Growing the Evidence Base for Healthcare Disparities and Social Determinants of Health Research in Otolaryngology–Head and Neck Surgery
Take two men, Ben and Larry, both diagnosed with oropharyngeal cancer in 2015.
Uchechukwu Megwalu, MD, MPH; Nikhila P. Raol, MD, MPH; Allison K. Ikeda, MD; Victoria S. Lee, MD; Li Xing Man, MD; Jennifer J. Shin, MD, SM; and Michael J. Brenner, MD
Take two men, Ben and Larry, both diagnosed with oropharyngeal cancer in 2015. Ben is a software engineer for a thriving tech company with employer-based insurance; Larry earns minimum wage at a fast-food restaurant, has limited access to medical care, struggles to pay rent, and cannot miss work. Ben’s tumor was detected at an early stage. Ben had timely initiation of therapy, and he is currently alive and disease free—considered cured five years out. Larry was diagnosed with advanced disease, underwent chemoradiation, and suffered recurrence. He underwent salvage surgery but died in 2017. Now suppose that Ben is White and Larry is Black.
A Tale of Two Tumors or of Structural Inequity?
The preceding depiction is disquieting because it lays bare how inequities in access to care translate into starkly different outcomes. Even if one matched Ben and Larry for tumor stage at presentation, medical morbidities, HPV-positive tumor status, and any number of other biological variables, disparate outcomes would still persist at the population level.1 While outcomes may differ as a function of disease characteristics, social determinants of health and structural inequities underlie health disparities. The National Library of Medicine defines health disparities as variation in rates of disease occurrence and disabilities between socioeconomic and/or geographically defined population groups.2 Systemic inequity in healthcare access and outcomes across race and wealth has long been evident in the United States healthcare system.
At the 1966 Chicago Convention of the Medical Committee for Human Rights, Martin Luther King, Jr. observed that “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”3 Yet, progress on the healthcare front has been slow and arduous in the ensuing half century, and there is significant evidence of disparity in otolaryngology-head and neck surgery. The Institute of Medicine, in its 2001 publication, “Crossing the Quality Chasm,” asserted that healthcare should “[n]ot vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.”4 Twenty years later, the COVID-19 pandemic has revealed persistent staggering disparities, with Black, Latinx, and Native Americans suffering far higher rates of hospitalization and mortality from COVID-19 compared with non-Hispanic Whites.5
What Is the Evidence Base in Otolaryngology–Head and Neck Surgery?
Disparities in access to care and treatment outcomes have been documented in several areas of our specialty, including head and neck cancer, pediatric sleep apnea, and hearing loss.1,6 In addition to clinical risk factors, sociodemographic factors—such as race/ethnicity, gender, socioeconomic status, geography, and insurance status—exert powerful influences on health. Among patients with head and neck cancer, Black patients and patients with Medicaid or no insurance are less likely to receive appropriate treatment.1 Several studies have also shown that low socioeconomic status is associated with later stage at diagnosis and worse survival in patients with head and neck cancer.7-10 Black patients are more likely to be socioeconomically disadvantaged,11 further increasing the likelihood of presenting with advanced stage disease.12 Racial disparities also exist in the pediatric otolaryngology population, where Black children with sleep-disordered breathing are less likely to undergo adenotonsillectomy than other racial groups despite higher rates of disease.13 Studies of children with allergic rhinitis have shown that racial/ethnic minorities and those enrolled in Medicaid have higher sensitization, poorer control, and less access to care.14
Significant disparities are also associated with insurance status, a pattern best documented in patients with head and neck cancer. Uninsured and Medicaid patients are more likely to present with advanced disease, are less likely to receive appropriate treatment, and have worse survival, even after adjusting for disease stage and treatment received.15-18 Because racial/ethnic minorities are also more likely to be uninsured or underinsured, the interactions between race/ethnicity, insurance status, and socioeconomic status further drive racial disparities in health outcomes.19-23
Beyond Defining the Problem
Growing the evidence base on disparities is but the first step in health disparities research, which has been described as having three phases: detecting, understanding, and reducing.24 Most disparities research in otolaryngology has focused on documenting the scope of the problem; however, evidence for what works to resolve these disparities remains disappointingly thin. It is time for us to engage a broad variety of investigators who will purposefully identify, implement, and rigorously test viable solutions.
Identifying these solutions requires an in-depth understanding of the drivers of disparities. These drivers are often complex and multifactorial, requiring a multilevel approach. Variation in quality of care exacerbates disparities in health outcomes. Several studies have shown that racial minorities are more likely to receive treatment in low-quality hospitals.25-28 Addressing variation in quality of care should be a priority for clinicians because quality of care is an actionable target within the control of clinicians. Quality improvement projects aimed at achieving better outcomes at low-performing hospitals may help mitigate disparities.
There is a paucity of data on what is reliably effective to address disparities, and otolaryngology-head and neck surgery as a specialty has a responsibility for generating valid knowledge and evidence. Grant mechanisms are needed to support new investigators committed to studying disparities and to delivering equitable outcomes. Our specialty needs to attract a variety of researchers in all subspecialties and career stages. Disparities research has inherent appeal to many and need not be confined to a select few. Considering the health-related consequences of social determinants of health, measured in quality and quantity of life, there is an urgent need for such work.
Confronting Bias in Clinical Practice and Growing the Research Pipeline
Every cross-cultural patient-provider encounter is an opportunity to improve understanding and address disparities. Provider attitudes toward patients based on age, disability, ethnicity, gender, gender identity, geographic location, primary language, race, religion, sexual orientation, and socioeconomic status can negatively impact care for disadvantaged patients. Implicit bias includes unconscious thoughts and feelings toward others and has been shown to negatively impact the patient-provider interactions, treatment decisions, treatment adherence, and health outcomes.29 Clinicians should be mindful of their implicit biases in order to try to reduce them and promote health equity. Otolaryngologists can also aspire to cultural humility, a concept that, in contrast to cultural competency, recognizes an ongoing need for learning without a defined endpoint, as well as efforts to recognize and reduce power differentials.
There is also a pressing need to improve the diversity of the otolaryngology workforce. Black and Hispanic physicians are significantly underrepresented in otolaryngology. There is evidence for improved patient-provider interactions when racial/ethnic minority patients are seen by physicians of similar racial/ethnic or gender backgrounds.30 For example, receptiveness to recommended therapy increases, barriers to trust may be diminished, and risk of bias is reduced. A diverse workforce can also invigorate research efforts. The small numbers of diverse surgeon scientists will only grow if our specialty commits to purposeful outreach at key transition points and to providing the resources to execute the science. Improving the diversity of the workforce thus can improve ability to meet the needs of diverse communities.
Significant disparities in care and treatment outcomes exist in otolaryngology-head and neck surgery and improving the evidence base in this domain is critical. While there has been significant growth in health disparities research in our specialty, studies thus far have predominantly focused on problem identification. Further progress relies on understanding the drivers of disparities, and then identifying and testing interventions. The future of disparities research will increasingly incorporate implementation science, using a transdisciplinary lens that brings together epidemiology, population health, and healthcare delivery. Through partnership across disciplines, we can improve early detection and treatment as well as preserve quality of life. Success of such efforts is predicated on attracting and supporting new investigators committed to careers in studying disparities.
1. Mahal BA, Inverso G, Aizer AA, Bruce Donoff R, Chuang S-K. Impact of African–American race on presentation, treatment, and survival of head and neck cancer. Oral Oncol. 2014;50(12):1177-1181. doi:10.1016/j.oraloncology.2014.09.004
2. U.S. National Library of Medicine. MeSH Browser. Accessed February 1, 2021. https://meshb.nlm.nih.gov/record/ui?ui=D054624
3. Martin Luther King, Jr. Presented at the: Second National Convention of the Medical Committee for Human Rights; March 25, 1966; Chicago, USA.
4. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies Press (US); 2001. Accessed March 1, 2021. http://www.ncbi.nlm.nih.gov/books/NBK222274/
5. Price-Haywood EG, Burton J, Fort D, Seoane L. Hospitalization and Mortality among Black Patients and White Patients with Covid-19. N Engl J Med. Published online May 27, 2020. doi:10.1056/NEJMsa2011686
6. Jabbour J, Robey T, Cunningham MJ. Healthcare disparities in pediatric otolaryngology: A systematic review. The Laryngoscope. 2018;128(7):1699-1713. doi:10.1002/lary.26995
7. Auluck A, Walker BB, Hislop G, Lear SA, Schuurman N, Rosin M. Socio-economic deprivation: a significant determinant affecting stage of oral cancer diagnosis and survival. BMC Cancer. 2016;16. doi:10.1186/s12885-016-2579-4
8. McDonald JT, Johnson-Obaseki S, Hwang E, Connell C, Corsten M. The relationship between survival and socio-economic status for head and neck cancer in Canada. J Otolaryngol–Head Neck Surg. 2014;43:2. doi:10.1186/1916-0216-43-2
9. Rylands J, Lowe D, Rogers SN. Outcomes by area of residence deprivation in a cohort of oral cancer patients: Survival, health-related quality of life, and place of death. Oral Oncol. 2016;52:30-36. doi:10.1016/j.oraloncology.2015.10.017
10. Megwalu UC. Impact of County-Level Socioeconomic Status on Oropharyngeal Cancer Survival in the United States. Otolaryngol–Head Neck Surg. 2017;156(4):665-670. doi:10.1177/0194599817691462
11. Williams DR, Mohammed SA, Leavell J, Collins C. Race, socioeconomic status, and health: Complexities, ongoing challenges, and research opportunities. Ann N Y Acad Sci. 2010;1186(1):69-101. doi:10.1111/j.1749-6632.2009.05339.x
12. Megwalu UC, Ma Y. Racial Disparities in Oropharyngeal Cancer Stage at Diagnosis. Anticancer Res. 2017;37(2):835-839.
13. Morton S, Rosen C, Larkin E, Tishler P, Aylor J, Redline S. Predictors of sleep-disordered breathing in children with a history of tonsillectomy and/or adenoidectomy. Sleep. 2001;24(7):823-829. doi:10.1093/sleep/24.7.823
14. Stevenson MD, Sellins S, Grube E, et al. Aeroallergen sensitization in healthy children: racial and socioeconomic correlates. J Pediatr. 2007;151(2):187-191. doi:10.1016/j.jpeds.2007.03.001
15. Shin JY, Yoon JK, Shin AK, Blumenfeld P, Mai M, Diaz AZ. Association of Insurance and Community-Level Socioeconomic Status With Treatment and Outcome of Squamous Cell Carcinoma of the Pharynx. JAMA Otolaryngol Neck Surg. 2017;143(9):899-907. doi:10.1001/jamaoto.2017.0837
16. Inverso G, Mahal BA, Aizer AA, Donoff RB, Chuang S-K. Health Insurance Affects Head and Neck Cancer Treatment Patterns and Outcomes. J Oral Maxillofac Surg. doi:10.1016/j.joms.2015.12.023
17. Kwok J, Langevin SM, Argiris A, Grandis JR, Gooding WE, Taioli E. The impact of health insurance status on the survival of patients with head and neck cancer. Cancer. 2010;116(2):476-485. doi:10.1002/cncr.24774
18. Saraswathula A, Megwalu UC. Insurance Status and Survival of Patients with Salivary Gland Cancer. Otolaryngol–Head Neck Surg Off J Am Acad Otolaryngol-Head Neck Surg. Published online October 16, 2018:194599818791798. doi:10.1177/0194599818791798
19. Sohn H. Racial and Ethnic Disparities in Health Insurance Coverage: Dynamics of Gaining and Losing Coverage over the Life-Course. Popul Res Policy Rev. 2017;36(2):181-201. doi:10.1007/s11113-016-9416-y
20. Monheit AC, Vistnes JP. Race/Ethnicity and Health Insurance Status: 1987 and 1996. Med Care Res Rev. 2000;57(suppl 1):11-35. doi:10.1177/107755800773743583
21. Brown SL, O’Connell L. Restricted access to care: the role of race, managed care, and type of insurance. J Health Care Finance. 2004;31(2):26-37.
22. Kirby JB, Kaneda T. Unhealthy and uninsured: Exploring racial differences in health and health insurance coverage using a life table approach. Demography. 2010;47(4):1035-1051.
23. Wehby GL, Lyu W. The Impact of the ACA Medicaid Expansions on Health Insurance Coverage through 2015 and Coverage Disparities by Age, Race/Ethnicity, and Gender. Health Serv Res. 2018;53(2):1248-1271. doi:10.1111/1475-6773.12711
24. Kilbourne AM, Switzer G, Hyman K, Crowley-Matoka M, Fine MJ. Advancing Health Disparities Research Within the Health Care System: A Conceptual Framework. Am J Public Health. 2006;96(12):2113-2121. doi:10.2105/AJPH.2005.077628
25. Liu JH, Zingmond DS, McGory ML, et al. Disparities in the utilization of high-volume hospitals for complex surgery. JAMA. 2006;296(16):1973-1980. doi:10.1001/jama.296.16.1973
26. Huang LC, Tran TB, Ma Y, Ngo JV, Rhoads KF. Factors that influence minority use of high-volume hospitals for colorectal cancer care. Dis Colon Rectum. 2015;58(5):526-532. doi:10.1097/DCR.0000000000000353
27. Dimick J, Ruhter J, Sarrazin MV, Birkmeyer JD. Black patients more likely than whites to undergo surgery at low-quality hospitals in segregated regions. Health Aff (Millwood). 2013;32(6):1046-1053. doi:10.1377/hlthaff.2011.1365
28. Huang LC, Ma Y, Ngo JV, Rhoads KF. What factors influence minority use of National Cancer Institute-designated cancer centers? Cancer. 2014;120(3):399-407. doi:10.1002/cncr.28413
29. Hall WJ, Chapman MV, Lee KM, et al. Implicit Racial/Ethnic Bias Among Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review. Am J Public Health. 2015;105(12):e60-e76. doi:10.2105/AJPH.2015.302903
30. Cooper-Patrick L, Gallo JJ, Gonzales JJ, et al. Race, gender, and partnership in the patient-physician relationship. JAMA. 1999;282(6):583-589. doi:10.1001/jama.282.6.583