Let's Get Serious About Racial and Ethnic Disparities
Neil R. Powe
Department of Medicine, Johns Hopkins University School of Medicine, Departments of Epidemiology and Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, and Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, Maryland
Correspondence: Dr. Neil R. Powe, Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, 2024 E. Monument Street, Suite 2-600, Baltimore, MD 21205. Phone: 410-955-6953; Fax: 410-955-0476; E-mail: npowe{at}jhmi.edu
Racial and ethnic disparities in health and health care havebeen documented for over two decades in kidney disease, in avariety of other conditions, across settings, and for differentmedical and surgical interventions. We now have government reportsthat track progress on reducing racial disparities, but thepace of progress has been disheartening. The reasons for someof these disparities are known and include biologic, socioeconomic,cultural, and environmental factors as well as system, patient,and provider factors that affect access and quality of medicalservices. For other disparities, they remain an enigma. Solutionshave been slow incoming in large part because we have not heldourselves, and others, accountable for better results. It istime to get serious about equitable health care for all of us.
I just received two government reports addressing the stateof health and health care for minorities in the United States:Health United States 2007 and the 2007 National Health CareDisparities Report (NHDR). I always wait with great anticipationto open the covers. Health United States 2007, produced by theCenters for Disease Control and Prevention and its NationalCenter for Health Statistics, is an annual snapshot of our progresson the nation's health.1 It states that life expectancy in theUnited States at birth is 6.2 yr shorter for black males and3.5 yr for black females versus their white counterparts (75.7yr for white males, 69.5 yr for black males, 80.8 yr for whitefemales, and 76.3 yr for black females). In a special featureon access to healthcare, Health United States 2007 says thatblack patients with end-stage renal disease (ESRD) make up 33%of all patients on the kidney transplants waitlist comparedwith the proportion of 13% they make up in the general population.White patients in 2004 were more likely to receive a transplantwithin 2 yr (30%) than black, Asian, or Hispanic patients (20%).Less prominently displayed in this chapter on kidney transplantsis the well-known fact to the kidney disease community thatblack persons with chronic kidney disease (CKD) accelerate fasterto ESRD than similar white persons, black persons are significantlymore likely to develop ESRD, and black persons do so at an earlierage, even if we take into account their higher diabetes andhypertension prevalence rates. The U.S. Renal Data System hasbeen documenting this information in its annual data reportsfor years.2
The 2007 NHDR, produced by the Agency for Healthcare Researchand Quality, now in its 5th year in collaboration with agenciesacross the Department of Health and Human Services, describesthe quality and access to care for multiple subgroups of thepopulation across the United States and tracks their progressover time.3 In a chapter on ESRD, I am delighted to see in 2005(the most recent data available), black adults who have themisfortune of needing chronic hemodialysis are almost equallyas likely as whites (87% and 88%, respectively), and Hispanicsmore likely than whites (91% and 87%, respectively), to receiveadequate dialysis as reflected by a urea reduction ratio of65% or greater. However, the data on the proportion of blackdialysis patients who are registered on the waitlist for transplantationremained the same over 5 yr (10.5% in 2003) and lower than thatfor whites (16.1% in 2003).
These disparities are not peculiar to CKD. The 2007 NHDR indicatesthat across all of its core measures, and for all priority groups,the number of measures of quality and access where disparitiesexist grew larger over 5 yr (Figure 1, A and B). The measuresof healthcare quality are structured along four dimensions:effectiveness, patient safety, timeliness, and patient centeredness.They address four stages of care: staying healthy, getting better,living with illness or disability, and coping with the end oflife. The measures of healthcare access address how easily patientsare able to get needed health care and their actual use of services.The indicators are structured along two dimensions: facilitatorsand barriers to care and healthcare utilization. For blacksversus whites, 60% of disparities in quality of care are notgetting better. For Hispanics, 56% of disparities in qualityof care are not getting smaller. For the poor, more than 60%of disparities in quality of care are not getting smaller.
Figure 1. Change over time in core quality and access measures for members of selected groups compared with reference group from 2000 to 2001 to 2004 to 2005. The number of measures of quality and access where disparities exist grew larger between 2000 to 2001 and 2004 to 2005. From the Agency for Healthcare Research and Quality: 2007 National Healthcare Disparities Report. (A) Change over time in core quality measures. (B) Change over time in core access measures. Improving, population-reference group difference becoming smaller at rate greater than 1% per year; Same, population-reference group difference changing at less than 1% per year; Worsening, population-reference group difference becoming larger at rate greater than 1% per year; AI/AN, American Indian or Alaska Native. "Asian" includes Asian or Pacific Islander when information is not collected separately for each group. Data presented are the most recent data available.
I appreciate that our nation now tracks these important statisticsvery carefully. Arguably, this is an incomplete picture of kidneydisease disparities, but I am grateful that kidney disease getssome attention in these national reports and statistics. Myfirst quantitative glimpse of race and ethnic disparities was23 yr ago when the Report of the Secretary's Task Force on Blackand Minority Health (also known as the Heckler Report) was released,a 1985 landmark, 10-volume set that attempted to document theextent of health disparities by race.4 Since that time, we havewitnessed a plethora of research studies and reports illuminatinghow racial and ethnic disparities are almost omnipresent indifferent conditions, among the young and the old, in hospitalsand physician offices, and across preventive, diagnostic, andtherapeutic services. Specific disparities have been extensivelyand repeatedly documented in CKD (Table 1). I am surprised,but thankful, when rare reports say no race or ethnic disparitiesexist.
In the last two decades, we have come a long way in learningthat possibly biologic, socioeconomic, psychosocial, cultural,and environmental factors, and access and quality of healthcare are responsible for differences in health along race andethnic lines. System, patient, and provider factors are barriersto good access and quality of health care (Figure 2). Studieshave suggested that a broken healthcare system that concentratesthe care of minorities in certain types of facilities and physicianpractices with limited access to medical technologies and otherresources may play a role in disparities.5–7 Primary careproviders seem to lack knowledge about the epidemiology of kidneydisease, particularly that black race and family history arerisk factors for CKD.8 In other settings, healthcare providershave been shown to associate race with patient intelligence,education, feelings of affiliation, and beliefs about risk behavior.Providers’ communication and the nature of their interactionswith patients (such as the extent to which they involve patientsin decisions) also seem to vary with the race of their patients.9Finally, a myriad of factors—patient knowledge, attitudes,cultural beliefs, health behaviors (smoking, exercise, diet,care seeking), adherence, language, health literacy, socialsupport, religious beliefs, fear, self-efficacy, preferences,psychosocial factors, and trust in providers (physicians andhospitals)—have been demonstrated to vary by race andethnic group.10,11 The racial disparities in kidney transplantationdocumented in the government reports on my desk illustrate themyriad of factors that could be responsible. Racial disparitiesin kidney donation and transplantation can arise from geneticincompatibility, waitlist registration practices, the proceduresby which organizations request and consent families for kidneys,donor kidney acceptance practices, patient interest in a transplant,provider inferences about the adherence to or ability to payfor immunosuppressive therapy, attitudes and beliefs about organdonation, and differences in risk factors for kidney diseaseprogression post-transplantation.
Figure 2. Barriers in access and quality of health care leading to disparities.
I am quite incensed by the lack of more rapid progress and outragedthat we can’t cure these disparities. In 2006, 14.7 ofthe U.S. population declared themselves as Hispanic, 12.3% black,0.8% American Indian or Alaskan Native, 4.3% Asian, 0.1% NativeHawaiian or Pacific Islander, 1.4% of mixed race, and 66.5%white. Projections suggest that 50% of the U.S. population willbe comprised of minority groups by the year 2050. The stateof California has already reached this mark. Therefore, theprice of suboptimal health, including kidney disease, to oursociety and its human and economic losses in the future willbe large. We have talked and collected statistics about healthdisparities for decades. Why are disparities still with us?I believe this is because no one has been held accountable.Isn’t it time we got serious about accountability forcuring racial disparities and restoring health to persons fromracial and ethnic minority groups?
There are several ways we can get serious. First, let's getserious about research and the creative solutions it may bring.We need to accelerate investment into understanding the "pathophysiology"(all of the mechanisms and their inter-relationships) for disparitiesin kidney disease and translate that understanding into testingeffective interventions to address them. For example, we stilldo not understand why blacks and Hispanics are more likely toprogress to ESRD, whether it is biologic (genetic), nonbiologic(lack of optimal care or poverty), or most likely a combinationof pathways to a complex disease. The long-term cohort studysprung from the recent African American Study of Kidney Diseasesuggests that the cumulative incidence of combined serum creatininedoubling, ESRD, and death events still continues to rise to54% over 10 yr among the black persons followed in the study,despite some reduction by treatment with a renin-angiotensinsystem blocking agent.12 Quality improvement programs have alsobeen disappointingly ineffective.13,14
An Institute of Medicine committee examined the "UnfinishedBusiness" of the National Institutes of Health for its HealthDisparities Research Plan.15 The committee called for refinementand development of conceptual, definitional, and methodologicissues in health disparities research to further understandthe cause of disparities. It also called for updating of a strategicplan to address the multifactorial nature of health disparities,including the role of nonbiologic (in addition to biologic)factors, population research and causes, and importantly thesetting of targets for accountability. The National Instituteof Diabetes and Digestive and Kidney Diseases has admirablyincreased the percentage of its total appropriation for healthdisparities from 8.64% in 1999 to 10.85% in 2004, just abovethe average (9.29%) for all Institutes and Centers. It was 9thin health disparity funding rank among the 25 National Institutesof Health institutes and centers in 2004. It was 15th in theranking of percentage (5%) of Research Career Awards awardedto budding, underrepresented minority scientists with a rankof 4 in total number (n = 25) of Research Career Awards. Minorityscientists are more likely to be interested in minority healthissues and delivery of care to minority patients. While NationalInstitute of Diabetes and Digestive and Kidney Diseases progressis better than the National Institutes of Health average, thereis clearly room for improvement and accountability.
Second, let's get serious about and accountable for the healthcare we provide. Physicians, other providers, and healthcaredelivery organizations should view disparities in care as aquality of care problem in need of improvement. Disparitiesshould be a metric in performance measurement and quality improvementinitiatives. Our healthcare institutions should measure howthey are performing with regard to providing equitable careacross both race and other dimensions of diversity. The disparitiesin both the early and late stages of CKD are challenging becausethey involve physicians other than nephrologists; primary carephysicians are involved early on, transplant surgeons later,and other specialists, including endocrinologists, cardiologists,and vascular surgeons throughout the course of the patient'slife. When many minorities develop kidney disease, often nophysicians are involved in their care. Screening programs thatappropriately target high-risk minorities unlikely to have accessto health care for CKD are important. Indeed, minorities whodevelop ESRD are less likely to have seen a specialist earlyon in their course of kidney disease.16 Research shows racialdisparities in the use of cardiovascular procedures diminishwhen patients develop ESRD, obtain Medicare coverage, and comeunder the care of nephrologists.17
Research has also shown that concordance of patient and physiciancharacteristics leads to greater shared decision-making andpatient satisfaction.18 Although we cannot alter immutable characteristics,we can become more competent in how we communicate with patientswho do not share our background. We should also embrace ourresponsibility to become aware of situations where disparitiesexist and be attentive to our biases in interacting with patientsor providing the services they need.19 Providing equitable care,according to the Institute of Medicine, is to provide "carethat does not vary in quality because of personal characteristicssuch as gender, ethnicity, geographic location or socio-economicstatus."20
Finally, some of the lesions leading to the persistence of disparitiesmay lie in policy decisions for health care nationally or locally.The kidney disease community should strongly advocate for solutionsthat address broader issues, such as lack of awareness of kidneydisease and its prevention, inadequate health insurance, andforces leading to the concentration (if not segregation) ofcare of racial and ethnic minorities to certain institutions,providers, and community services. We should hold elected officialsaccountable for equitable policies. We should not use flawedhealth policy such as lack of health insurance as an excusefor inertia, as it has been shown than disparities in care existeven among those with public health insurance coverage throughMedicare. We all need to join the patient advocacy and publichealth campaign for prevention and optimal treatment of CKD.
As physicians, scientists, and educators, we have a collectiveresponsibility to make sure that substantial progress will bemade and demonstrated in the government reports that will landon my desk in future years. There is a professional, economic,and ethical imperative to eliminate health disparities. We havethe means to find and implement solutions by holding ourselves,and others, accountable. So, along with me, please get seriousabout eliminating disparities.
National Center for Health Statistics: Health, United States, 2007 With Chartbook on Trends in the Health of Americans, Hyattsville, MD, National Center for Health Statistics, 2007
National Institutes of Health: United States Renal Data System, USRDS 2007 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, Bethesda, MD, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, 2007
Agency for Healthcare Research and Quality: 2007 National Healthcare Disparities Report [AHRQ Publication No. 08–0041], Rockville, MD, U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality, 2008
U.S. Department of Health and Human Services: Report of the Secretary's Task Force on Black, Minority Health (Margaret M. Heckler, Secretary), Bethesda, MD, U.S. Department of Health and Human Services, 2005
Bach PB, Pham HH, Schrag D, Tate RC, Hargraves JL: Primary care physicians who treat blacks and whites.
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Top
Abstract
Introduction
20%). Less prominently displayed in this chapter on kidney transplants is the well-known fact to the kidney disease community that black persons with chronic kidney disease (CKD) accelerate faster to ESRD than similar white persons, black persons are significantly more likely to develop ESRD, and black persons do so at an earlier age, even if we take into account their higher diabetes and hypertension prevalence rates. The U.S. Renal Data System has been documenting this information in its annual data reports for years.2 
