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Journal of the American Society of Nephrology : JASN logoLink to Journal of the American Society of Nephrology : JASN
. 2022 Dec;33(12):2141–2152. doi: 10.1681/ASN.2022080890

Designing Interventions Addressing Structural Racism to Reduce Kidney Health Disparities: A Report from a National Institute of Diabetes and Digestive and Kidney Diseases Workshop

Deidra C Crews 1,, Rachel E Patzer 2,3, Lilia Cervantes 4, Richard Knight 5,6, Tanjala S Purnell 7, Neil R Powe 8, Dawn P Edwards 9, Keith C Norris 10
PMCID: PMC9731627  PMID: 36261301

Abstract

Structural racism embodies the many ways in which society fosters racial discrimination through “mutually reinforcing inequitable systems” that limit access to resources and opportunities that can promote health and well being among marginalized communities. To achieve health equity, and kidney health equity more specifically, structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases convened the “Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities” workshop, which was aimed at describing the mechanisms through which structural racism contributes to health and health care disparities for people along the continuum of kidney disease and identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Participants identified six domains as key targets for interventions and future research: (1) apply an antiracism lens, (2) promote structural interventions, (3) target multiple levels, (4) promote effective community and stakeholder engagement, (5) improve data collection, and (6) advance health equity through new health care models. There is an urgent need for research to develop, implement, and evaluate interventions that address the unjust systems, policies, and laws that generate and perpetuate inequities in kidney health.

Keywords: health disparities, CKD, racism, racial and ethnic disparities

Background

Racism is a system of structuring opportunity and assigning value on the basis of the social interpretation of how one looks (referred to as “race”). Racism operates at multiple levels commonly categorized as (1) structural/institutional, (2) interpersonal, and (3) internalized.1 Racism, by design, unfairly disadvantages the health and wellness of some populations and communities, while advantaging others.1 Structural racism (which is at the broader societal level), in contrast to even large institutions, corporations, or businesses (institutional level), has the largest population-level effect on health through its discriminatory influence on laws, policies, and practices. Structural racism embodies the many ways in which a society fosters racial discrimination through the inequitable allocation of resources and opportunities embedded within “mutually reinforcing systems,” such as housing, education, employment, wealth, access to health care and food, and other spheres (commonly termed social determinants or structural drivers of health [SDoH]) that promote or limit health for a given community.24 Thus, structural racism leads to the maldistribution of the SDoH, which creates inequities in health-promoting resources across populations and communities, and in turn drives the observed racial and ethnic disparities across health conditions. For this reason, structural racism is now recognized as the major cause of race-based health inequities, including in kidney disease.512

To achieve health equity, “a state where everyone has a fair and just opportunity to be as healthy as possible,”13 structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) convened the “Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities” virtual workshop, which included a series of defining talks followed by group discussions aimed at (1) describing the mechanisms through which structural racism contributes to health and health care disparities for people along the continuum of kidney disease and (2) identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Discussions were guided by a conceptual framework (Figure 1), illustrating how structural racism contributes to longstanding and stark inequities in health and health care for people with kidney disease including the upstream SDoH, for example, public policies; the midstream SDoH, for example, housing conditions, neighborhood environment, food insecurity, and access to equitable high-quality health care that shape health; and the downstream effects, for example, neurohormonal and epigenetic changes that these SDoH have on people at risk for or living with kidney disease. Key points from the talks and intervention opportunities presented during the final session are highlighted below.

Figure 1.

Figure 1.

Conceptual framework for root causes of kidney health disparities. Structural racism contributes to longstanding and stark inequities in health and health care for people with kidney disease including the upstream structural determinants—including inequitable health and health care policies that create and perpetuate health disparities; the midstream social determinants such as housing conditions, neighborhood environment, food insecurity, and access to equitable high-quality health care that shape health; and the downstream effects these social determinants have on the lives of individuals at risk of and living with kidney disease.

Structural Racism and Health

Studies of racism and health have largely focused on access to care and individual experiences of racial discrimination, including in the health care setting. The 2003 Institute of Medicine report, “Unequal Treatment,” documented the inferior health care accorded to Black and Latino/Latina/Latinx populations (Latinx is a gender-inclusive term for people of Latin American descent, intended to increase the visibility of gender-expansive people; as used in this manuscript, it is intended to be inclusive of Hispanic people). It also provided recommendations to improve medical care financing, allocation of care, availability of language interpreters, community-based care, and other approaches.14

Over the past two decades, research has shifted from studies of individual experiences of interpersonal racism to those elucidating the intervening factors and effects of structural racism. For example, a number of studies have reported on the effect of racial residential segregation (driven by discriminatory practices including but not limited to “redlining,” which describes drawing lines on city maps to create race-based discriminatory geographic areas for bank and business investment and the provision of mortgages) on adverse health outcomes.1522 As this area of research advances, intervention studies targeting multiple levels (individual, interpersonal, community, and societal) and domains of influence (biologic, behavioral, physical/built environments, sociocultural, and health care system) will be critical to overcome the inequities created through structural racism (Supplemental Figure 1). Interventions are needed that address structural factors of how the local context influences societal-, community-, and individual-level risk, and identify points and mechanisms by which risk and protective factors interact.

Structural Racism and Kidney Health

Racial and ethnic minoritized (e.g., socially marginalized racial or ethnic groups) groups in the United States (including Black, American Indian and Alaska Native, Native Hawaiian, or Pacific Islander and Latinx individuals) bear a disproportionate burden of advanced CKD and kidney failure.23 Root causes of racial and ethnic disparities in CKD burden and care are complex and include structural racism, among other causes. For example, not only food deserts, but “food apartheid” (which acknowledges the discriminatory sociopolitical forces leading to minoritized communities having lesser access to healthy foods),24 contributes to poor dietary patterns among these populations, and likely to the association of food insecurity with progression to kidney failure.25 The recent development of a race-free GFR estimating equation26 should affect Black patients with CKD by reducing delays in referral to nephrology specialty care and KRT, with potential transient changes in medication use.2731

The effects of structural racism in dialysis care and outcomes are profound. Dialysis facilities located in areas with a higher percentage of Black residents (e.g., racially segregated areas) are more likely to have higher-than-expected mortality rates, and to not meet clinical performance targets, including timely transplant education.15,16,32 Furthermore, in many states, undocumented immigrants with kidney failure rely on emergency dialysis, which leads to physical and psychosocial distress and a higher mortality compared with scheduled dialysis because of structural rules embedded in health care regulations.33,34

Few interventions aimed at mitigating kidney health disparities have been tested, and many have targeted behavior change at the individual or interpersonal (e.g., patient-physician) levels as opposed to addressing structural drivers that perpetuate inequities, in part due to inadequate information on the drivers of disparities and under investment in research. The Special Diabetes Program of the Indian Health Service addressed numerous structural barriers to accessing health services and, among several favorable outcomes, led to a 54% reduction in diabetes-related ESKD among American Indians and Alaska Natives.35 An ongoing study, “Five Plus Nuts and Beans for Kidneys” (ClinicalTrials.gov, NCT03299816), is testing a dietary intervention for Black individuals with CKD living in an urban environment affected by food apartheid. In the dialysis setting, a natural experiment shows that structural changes in a regulation provided greater equity and support for undocumented immigrants to transition from emergency to scheduled dialysis, improvement in quality of life, symptom burden, and cost savings were realized.36,37

Patient and Caregiver Perspectives

Patient insights are critical for research agenda setting in kidney disease.3840 Patients and other stakeholders from minoritized communities offered their perspectives on intervention research needed to most effectively combat structural racism toward reducing kidney health disparities. In response to questions about their lived experiences with racism as they navigated the health care system, patients offered emotional reflections about assumptions of their nonadherence, stereotyping, lack of shared decision making, and dealing with adverse SDoH. Patients expressed dismay over not being informed about the dialysis options (e.g., peritoneal dialysis) that were best suited to their lifestyles. Patients discussed how their primary care physicians do not always listen to them, and how they feel stereotyped or ridiculed on matters such as weight. Caregivers noted language barriers due to the lack of bilingual staff and language interpreters at many dialysis facilities and the challenges for Spanish-speaking patients, which can be compounded for those with low levels of literacy. Patients expressed concern about not being diagnosed until near kidney failure and health care providers needing cultural diversity or culturally responsive training.

Patients with kidney disease from minoritized communities are often not consulted on their goals and aspirations, leaving them to address many of the challenges of navigating the health care system, including the effect of racial discrimination. Advancing patient-centered interventions addressing structural racism will be a significant step forward toward achieving health equity and improving quality of life for patients.41

Opportunities for Future Interventions and Research

The workshop included a series of four breakout groups that were instructed to identify areas for intervention and measurable outcomes (on day 1), and then discuss approaches, strategies, and study designs needed to evaluate potential interventions (day 2). Attendees settled on the following domains as key targets for interventions and future research: (1) apply an antiracism lens, (2) promote structural interventions, (3) target multiple levels, (4) promote effective community and stakeholder engagement, (5) improve data collection, and (6) advance health equity through new health care models (Table 1).

Table 1.

Approaches for interventions and future research addressing structural racism

Approach Description
• Apply an antiracism lens When one encounters racial and ethnic disparities ask first, how might racism be operating here? Focus on what discriminatory policies and practices might be identified that produce and/or sustain racial inequity.
• Promote structural interventions Promote interventions that can address major structures or drivers of health such as those that affect economic status, educational attainment, environment, community and social support, and access to care.
• Target multiple levels This may include targeting multiple levels of disease prevention and intervention (patient, provider, and system level) and multiple levels of structural drivers (e.g., environment/food security and social support/community health worker).
• Promote effective community and stakeholder engagement Many community partners and other nonacademic stakeholders are often more closely attuned to the many laws, policies, and practices that perpetuate community-level race-based inequities and the nuances through which they operate. Having them as partners is crucial to optimize antiracist interventions.
• Improve data collection Optimizing collection of social determinants of health when feasible and demographic subgroups (e.g., in addition to Asian—Japanese, Indian, Korean, Cambodian, Filipino, Chinese) can allow for a more nuanced approach to understanding disparities at subgroup levels that may be hidden when they are pooled into large populations. This approach may also facilitate the identification of rare gene polymorphisms that may affect health outcomes and may have differing degrees of association with racial or ethnic groups or subgroups (e.g., high-risk APOL1 being more prevalent in West Africa than East Africa, cystic fibrosis being much more prevalent in Ireland than in Italy).
• Advance health equity through new health care models New health care models to support health equity are rapidly emerging. This includes integration of holistic approaches and electronic health record tools to address medical needs and social risks, team-based care approaches such as shared decision making, and community health workers or navigators.

To achieve kidney health equity, workshop participants underscored interventions that target multiple levels—upstream approaches that aim to dismantle structural racism, and effective, sustainable, and scalable interventions to mitigate the downstream effects of exposure to the adverse SDoH.

Apply an Antiracism Lens

One key aspect of addressing structural racism is to recognize when it is operating. Dr. Camara Jones always reminds us that when we see racial inequities we should ask, “How might racism be operating here?”42 One way to apply an antiracist lens is to always ask that question in nephrology whenever we see group differences such as (1) evidence of inequities in access to health affirming resources and opportunities, (2) racial and ethnic disparities in CKD and kidney failure, and (3) the woeful under-representation of many minoritized racial and ethnic groups in the nephrology workforce. What then are the policies and practices underlying these observations? Racially discriminatory policies and practices can be defined as any measure that produces and/or sustains racial inequity between racial groups, whereas antiracist policies and practices would be any measure that produces and/or sustains racial equity between racial groups.43 This same approach should be used to interrogate inequities levied on persons of other marginalized identities. It is important to note that an organization or individual may apply an antiracist (antisexist, etc.) lens for some issues but not others, and at some points in time but not others. Thus, maintaining vigilance in the awareness of the many ways in which racism has become embedded in our society requires the constant application of an antiracist lens, including across all of the SDoH elements that affect kidney health.4447

Promote Structural Interventions

Workshop participants created several scenarios wherein potential structural interventions could address different aspects of kidney disease. Exemplars spanned community identified high-need social risks (e.g., food and housing insecurity) to health care access and more, and potential target populations, study designs, outcomes, and potential facilitators and challenges (Tables 2 and 3). These exercises highlighted an array of possible approaches that might be scalable with potential for dissemination. Discussions also included feasibility, given typical constraints of funding levels and duration, although new funding models and cross-sector collaborations were also considered.

Table 2.

Potential interventions to address structural racism in kidney disease populations proposed during workshop breakout sessions

Structural Target(s) Intervention(s) Target Population Design Outcomes Potential Facilitators Potential Challenges
Harmful effects of adverse SDoH (e.g., food insecurity, housing insecurity, access to care, transportation) specific to community contexts, needs, assets and preferences Train the trainer program to equip CHWs to provide:
• CKD, DM, and HTN screening
• Culturally and language concordant, trusted health education
• Motivational interviewing, patient activation, patient-centered goal setting
• Telehealth visits
• Partnership with CBOs to address social risks
Minoritized/marginalized populations with or at high risk for CKD Stepped wedge RCT, which allows all participants to potentially benefit from the intervention, in line with preferences of many communities • Patients screened for social risks
• Connection to care as needed
• Knowledge and awareness of CKD in community participants
• Patient activation and self-efficacy
• Community resilience
• Collaboration with community members and existing community sites
• Train-the-trainer approach may help with sustainability
• Some states require clinician(s) be on site for CHW-led interventions
• Ensuring sustainability
• Reimbursement may require certification of CHWs
• Ensuring education and training is paired with resources
• Stepped wedge RCT designs are statistically complex
Health care access barriers for children with CKD (e.g., transportation, lack of parental work leave policies, difficult to navigate health care systems) Pediatric transitions of care program providing:
• Outreach and support by a patient navigator/social worker/CHW/promotora
• Structured training for outreach providers
• Mobile technology to enhance adherence
• Mobile van for home visits
Pediatric (aged <26 years) patients with CKD and their families from minoritized or low-income non-Hispanic White populations Cluster randomized (by neighborhood), stepped wedged RCT • Kidney biomarkers (e.g., eGFR, UACR)
• CKD risk-factor control
• Adherence
• Quality of life
• Trust
• Mental health symptoms (depression/anxiety)
• Navigator fidelity
• Community-engaged approach
• Sustainability potential via novel payment models
• Health care system policy changes
• Employer policy changes for adults with children who need chronic disease care
• Study timeline
• Ensuring sustainability
• Stepped wedge RCT designs are statistically complex
Social needs identified by clinical screening and patient goal setting Tailored, virtual team care involving:
• Navigator to identify and screen for social risks using EHR tools
• Quarterly care team goal-setting discussions (including patient, family, caregivers)
• Culturally and linguistically tailored referrals to CBOs to address social risks
• Nurse and pharmacist to discuss medical concerns, medications and care coordination
• Quarterly reports in EHR available to medical team
Primary care and emergency department patients and caregivers with unrecognized CKD or at high risk of CKD identified from the EHR Three-arm patient-level RCT, stratified by primary care or emergency department:
1. Usual care
2. Navigator only
3. Navigator + goal setting + CBO referrals + nurse and pharmacist
Primary:
• Quality of life
• Clinical outcomes: eGFR, UACR, BP
• Patient activation
• Trust
• Engagement in goal setting
• Satisfaction
• General distress
• Caregiver burnout
Secondary:
• Nephrology and PCP burnout
• Equity in outcomes by SES, race/ethnicity
Implementation: Costs and resource use, patient and caregiver engagement, medication changes, provider views of quarterly reports
• Patient-centered approach
• Health system and community involvement
• Staffing costs, especially for clinicians
• Less physician oversight may result in less buy-in
• Cluster RCTs require uniformity in intervention delivery
Food apartheid/food deserts, predatory food marketing (e.g., by media), and barriers to nutrition education Multilevel food and nutrition program
Community food environment
• Incentivize (e.g., tax credit) food suppliers/retailers to provide affordable access to healthy foods
• Incentivize stores and major producers to implement culturally and literacy tailored kidney-friendly labeling
Health system
• EHR alert to identify people living in a food swamp or desert
• Referral to a kidney dietitian trained in structural competency and equity
Individual
• Education, coaching, and nutritional support to individuals and families
Individuals with early CKD and poorly controlled CKD risk factors Cluster RCT with randomization at two levels of intervention:
1. Community level, 50% of communities receive healthy, appropriately labeled foods
2. Individual level, 50% of participants receive nutritional education and health care interventions
Community level:
• Changes in food availability
• Pricing of kidney health-promoting items
• Availability of kidney-friendly labeled items
Individual level:
• CKD progression to kidney failure
• eGFR decline
• Albuminuria
• Control of risk factors (e.g., DM)
• Community engaged approach
• Partnerships with local businesses to improve sustainability and enhance community health education
• Data integration challenges
• Local sociopolitical environment
Resource deprivation/financial resource strain for pregnant people from marginalized communities Food, housing and income support to pregnant people to mitigate multigenerational trauma:
• Unrestricted income supplements
• Housing vouchers
• Provision of healthy food to whole family
Pregnant individuals and their children who reside in structurally disadvantaged communities Multilevel RCT comparing 1–5 years of intervention versus usual care over 10–30 years of follow-up At birth: weight, visceral adiposity, insulin sensitivity, cortisol levels, lipids, glucose, nephron number
Longitudinally:
• eGFR decline
• Albuminuria
• BP
• A1C
• Obesity
• Allostatic load
• Experiences of discrimination
• Patient activation
• Trust in health care
• Maternal food health literacy
• Familial dietary patterns
• Quality of life, stress
• Anxiety
• Collaboration with community
• Demonstrated effect of targeting income and wealth
• Need for improved data integration
• Duration of follow-up and related costs
• Ability to measure CKD effect versus effect on CKD risk factors

CHW, community health worker; DM, diabetes mellitus; HTN, hypertension; CBO, community-based organization; RCT, randomized controlled trial; PCP, primary care provider; EHR, electronic health record; SES, socioeconomic status; UACR, urine albumin-creatinine ratio.

Table 3.

Example intervention research questions by example structural target

Example Structural Target Example Research Question
Harmful effects of adverse SDoH specific to community contexts, needs, assets and preferences Will a community health worker-led intervention involving culturally and linguistically concordant patient education improve CKD screening and linkage to care for individuals from minoritized groups?
Health care access barriers for children with CKD Will a mobile van–based health care intervention improve adherence to follow up care for socially disadvantaged children with CKD?
Social needs identified by clinical screening Will assessment of social needs (e.g., food or housing insecurity) and support from a health system navigator for identifying community resources lead to slower kidney function decline among socially disadvantaged adults with early CKD?
Food apartheid/food deserts Will incentives for food suppliers/retailers to provide affordable access to healthy foods lead to improvements in the food purchasing patterns and kidney health (e.g., albuminuria) of their low-income patrons?
Resource deprivation/financial resource strain for pregnant people Will income supplements for pregnant individuals and their children who reside in structurally disadvantaged communities lead to reduced future risk of CKD and other cardio-metabolic health conditions for the parent and child?

Target Multiple Levels

Intervention research has historically focused on single-level interventions, often intervening only at the patient level. Yet, the causes of poor health in populations are complex and multilevel, with disparities influenced by factors in communities, health systems, schools, government, and more within our society.48,49 There is a wealth of literature in kidney disease on the multilevel barriers and facilitators of kidney health equity. For example, there is evidence of racism in access to early steps of the transplant process at the patient, provider, and system level, leading to lower referral and evaluation for minoritized groups and people with low socioeconomic status.50

Because structural racism operates across multiple socioecological levels and affects many domains of influence, interventions must be designed to address multiple SDoH. When clinicians, health care professionals, or biomedical researchers in kidney disease mistakenly assume the causes of health disparities are due exclusively to individual-level innate biology, genetics, or behaviors, the upstream causes of health disparities become neglected, and the actual root causes are missed leading to interventions, solutions, or treatments that are ineffective.51

Multilevel interventions can address critical contextual issues that are key to sustainable implementation of evidence-based interventions,52,53 as seen in the Reducing Disparities in kidNey Transplantation trial.54 This was a pragmatic trial that included a combination of multiple interventions, with established efficacy that were freely available to target many levels, including culturally responsive educational materials and resources for patients, monthly educational webinars and clinical decision aids for providers, and audit-and-feedback reports detailing racial disparities in facility referral for health systems.54 After 1 year of a community-engaged approach to intervention delivery, the adjusted mean difference in referral for transplant was nearly 10% between intervention versus control facilities, with the greatest effect among Black individuals.55

Multilevel interventions are less common in kidney disease and are complex, requiring careful planning, rigorous methods, substantial financial investment, organizational capacity and readiness, community engagement, and time.52,56 Overarching themes from successful interventions include meaningful community engagement, targeting social networks and the environment beyond the individual patient, and interactive and culturally concordant education.57 Additionally, translation of successful studies through implementation in practice moves meritorious interventions beyond the initial efficacy trial.

Promote Authentic Community and Stakeholder Engagement

Community partnering is becoming better recognized as an important antiracist approach to achieving health equity.58,59 Many leaders of community-based organizations and community advocates are closely attuned to the laws, policies, and practices that perpetuate race-based inequities they work to combat. In contrast, many in academia are unaware of, or dispute the existence of, structural racism and believe the 1964 Civil Rights Act led to equity for all Americans.60 Because structural racism is deeply embedded in society, strategies to intervene can be enhanced with partnered approaches that engage those most familiar with the nuances of how structural racism manifests. The field of community-engaged research has a broad history across numerous disciplines, with a range of models from community advisory boards to full community-academic partnership in research projects, from conceptualization to publication.6163 Ultimately, community-partnered research represents “collaborative approaches to research that equitably involves all partners in the research process and recognizes the unique strength that each brings.”64,65 Seven common core values emphasized for effective engagement are respect, equity, transparency, redirection of power, equality, asset-based approaches, and, most importantly, trust.65 Community engagement ensures the locus of control and ownership remains collaborative. It leverages ownership into action, and promotes organic development of thought, networks, and leaderships.65 This effort takes time, commitment, and desire, and moves at the speed of trust.

Consensus-based community approaches to designing solutions for CKD may include convening diverse groups of stakeholders (including patients) to elicit perspectives on disease-related issues through a mutual learning process.66,67 This approach can be used to develop shared research goals and agendas,68,69 educational approaches and materials,7072 research implementation strategies,54,73,74 partnered action plans that incorporate evidenced-based guidelines of care and community-partnered perspectives,7579 and more.66,80

Improve Data Collection

A key determinant of the effect of research is the rigor and appropriateness of the data collected and the procedures by which it is collected. Observational studies of health disparities are often limited by incomplete or missing data, lack of disaggregated data on race and ethnicity, and limited covariates of relevance to SDoH. We must work toward improved data collection to better inform intervention studies addressing structural racism, improved quantitative and qualitative data collection on structural and individual-level factors, and standardized and well-defined measures (e.g., PhenX toolkit).81 Qualitative assessments of patient and other partner stakeholders can elucidate outcomes of highest priority for the kidney health populations being supported by the intervention, and point to opportunities to scale and sustain the approach.82

To capture outcomes, data linkages should extend beyond individual outcomes to community and system-level outcomes and tracking. This can be facilitated by support for population-level data infrastructures. Better and more compatible data sources across sectors are needed to allow for linkages between existing and emerging data sources, such as electronic health records, registry data (e.g., US Renal Data System), and nonhealth sectors (e.g., urban planning, community-based organization) data to evaluate structural interventions. Data stratification (e.g., by racial and ethnic subgroups, language, etc.) is also essential for evaluating the intervention uptake and effect(s) for specific populations.8386

Advance Equity through New Health Care Models

Effective health care interventions documented to support advancing health equity include, but are not limited to, personalized relationships with patients; holistic approaches to addressing medical needs and social risks; culturally tailored, multifactorial interventions; team-based care approaches; community health workers/navigators; families and communities as partners; and interactive experiential education for clinical team members.87 As new models of kidney care are emerging, they should be intentional about advancing health equity by applying an antiracist lens to payment and delivery system reform, and they should be assessed for their effect on kidney outcomes and equity. Kidney care models can adopt strategies that have been successful in the care of other diseases and should promote access to quality insurance; improved scope of coverage to meet medical and social needs, payment reform to incentivize equity care transformations, and support for safety net institutions.11,8890

Opportunities for Funders, Academic Medical Centers, and Health Systems

The workshop findings offer important information for funding agencies, academic medical centers and health systems committed to reducing health disparities. Indeed, the National Institutes of Health (NIH) has made a commitment to address structural racism to address health disparities,91 and they and several other entities have recently released funding announcements focusing on structural racism (Table 4). Research approaches that are race conscious, race aware, and/or acknowledge embedded discriminatory laws, policies, and practices that continue to allocate health affirming resources and opportunities across racial lines will have the largest effect on reducing health disparities. Workshop participants highlighted the need for new funding strategies inclusive of longer-term funding (e.g., beyond a 5-year award), more accessible funding for community partners, and multisectoral collaborations.

Table 4.

Examples of recent funding opportunities focused on structural racism to address health disparities

Opportunity Title Organization Website
Understanding and addressing the effect of structural racism and discrimination on minority health and health disparities National Institutes of Health
National Institute on Minority Health and Health Disparities
https://grants.nih.gov/grants/guide/rfa-files/RFA-MD-21-004.html
Community-driven approaches to address factors contributing to structural racism in public health Department of Health and Human Services, Office of the Assistant Secretary for Health and Office of Minority Health https://www.grants.gov/web/grants/view-opportunity.html?oppId=336453&utm_medium=email&utm_source=govdelivery
Interventions that address structural racism to reduce kidney health disparities National Institutes of Health
National Institute of Diabetes and Digestive and Kidney Diseases
https://grants.nih.gov/grants/guide/rfa-files/RFA-DK-22-014.html
Data to improve community conditions shaped by structural racism Robert Wood Johnson Foundation https://www.rwjf.org/en/library/funding-opportunities/2022/data-to-improve-community-conditions-shaped-by-structural-racism.html
Community foundations band together to fight structural racism Community Foundations Opportunity Network https://cfon.org/assets/2021/03/Community-Foundations-Band-Together-to-Fight-Structural-Racism.pdf

In addition to federal, nonprofit, and industry funders, numerous individual medical centers and large health systems have made commitments to address structural racism and advance health equity.9294 For example, the Healthcare Anchor Network (https://healthcareanchor.network), a national consortium of >70 hospitals and health systems, is dedicated to defining the health care leadership standard and proactively addressing economic and racial inequities in the community, which are conditions that create poor health.95 Member organizations have adopted an institutional priority to address root causes: economic and racial inequities that create barriers to health and thriving for people and communities by leveraging their assets, including hiring, purchasing, and investment for equitable, local economic effect to achieve equity, community wellbeing, and sustainability as core principles of healthy communities.95 The emerging commitment of numerous funding agencies, academic medical centers, and health systems to address inequities in the SDoH is laying the foundation for the types of multisectoral initiatives needed to create effective and sustainable change. Because adverse SDoH affect broad swathes of populations, such initiatives can have far-reaching effects—not only improving the health status of minoritized populations, but optimizing the care and outcomes of all individuals.

With increasing awareness of the role of structural racism as the primary driver of health disparities, there is an urgent need for research to develop, implement, and evaluate interventions that address the maldistribution of SDoH, and focus on the upstream systems, policies, and laws that generate and perpetuate inequities in kidney health.2,3 This workshop elucidated some of the key directions and resources needed to advance this research area.

Disclosures

D. Crews reports having consultancy agreements with Yale New Haven Health Services Corporation Center for Outcomes Research and Evaluation; reports receiving research funding from Baxter International and Somatus, Inc.; reports receiving honoraria from Maze Therapeutics; reports having an advisory or leadership role as Associate Editor of Kidney360, Co-Chair of Bayer HealthCare Pharmaceuticals Inc. Patient and Physician Advisory Board Steering Committee for Disparities in Chronic Kidney Disease Project, Advisory Group, Health Equity Collaborative, Partner Research for Equitable System Transformation after COVID-19 (PRESTAC), the editorial boards of the CJASN, JASN, and the Journal of Renal Nutrition, and Optum Labson; and reports having other interests or relationships with the Board of Directors for National Kidney Foundation of Maryland/Delaware, Council of Subspecialist Societies for American College of Physicians, and the Nephrology Board of American Board of Internal Medicine. D. Edwards reports having employment with, and having consultancy agreements with, Fresenius/NxStage; reports receiving honoraria from Ardelyx Pharma and NIH/NIDDK; and reports having an advisory or leadership role with Forum of ESRD Networks Patent Advisory Council (Kidney Patient Advisory Council [KPAC]), Co-Chairperson (unpaid); Home Dialyzors United (unpaid), Island Peer Review Organization Board of Directors Member (paid), and NIH/NIDDK Advisory Council (paid). K. Norris reports having consultancy agreements with Atlantis Healthcare Compliance, research and quality care for dialysis and CKD care in Puerto Rico; reports receiving research funding from the NIH and the State of California; reports having an advisory or leadership role with American Association of Kidney Patients (AAKP), Association of American Medical Colleges (AAMC), ASN, Atlantis Healthcare, CJASN, ESRD Network Forum, Ethnicity and Disease, International Society of Nephrology (ISN), JASN, NIDDK Council, and National Kidney Foundation-Kidney Early Evaluation Program (NKF-KEEP); and reports having other interests or relationships with AAKP, ESRD Network Forum, NKF, and Society of General Internal Medicine (SGIM). L. Cervantes reports receiving research funding from Retrophin; reports having an advisory or leadership role with Retrophin/Travere; and reports having other interests or relationships with the National Kidney Foundation. R. Knight reports receiving honoraria from the American Kidney Fund, Johns Hopkins Center for Health Equity, Labcorp, Northwestern University, Novartis, Otsuka, and Personalized Medicine Coalition; reports having an advisory or leadership role with the NIDDK Advisory Council, Scientific Advisory Board for the “Rescuing Kidneys at Risk of Discard” project, and Scientific Registry of Transplant Recipients (SRTR) Review Committee; and reports having other interests or relationships as the AAKP President, Bowie State University Board of Advisors, Quality Insights Patient Advisory Committee Member, and SRTR Review Committee. T. Purnell reports having an advisory or leadership role with the American Society of Transplant Surgeons, National Minority Organ & Tissue Transplant Education Program (MOTTEP), and The Living Legacy Foundation of Maryland. N. Powe reports having an advisory or leadership role with Hennepin Healthcare Research Institute, Patient Centered Outcomes Research Institute, Portland VA Research Foundation, Robert Wood Johnson Foundation, University of Washington, and Vanderbilt University. R. Patzer reports having an ownership interest in Vital Software (spouse has ownership); reports having an advisory or leadership role with the editorial board of the American Journal of Transplantation, Chair of United Network for Organ Sharing Data Advisory Board, and the CJASN editorial board; and reports having other interests or relationships with Vital ER, where their spouse is a chief medical officer.

Funding

None.

Supplementary Material

Supplemental Data
ASN.2022080890-s0001.docx (200.7KB, docx)

Acknowledgments

The Workshop Organizing Committee included Dr. Raquel Greer (NIH/NIDDK lead), Dr. Keith Norris (Co-Chair), Dr. Deidra Crews (Co-Chair), Dr. Lilia Cervantes, Ms. Dawn Edwards, Mr. Richard Knight, Dr. Rachel Patzer, Dr. Neil Powe, Dr. Tanjala Purnell, Dr. Jennifer Alvidrez (NIH/ODP), Dr. Paul Kimmel (NIH/NIDDK), Dr. Vanessa Marshall (NIH/NIMHD), Dr. Jenna Norton (NIH/NIDDK), Dr. Susan Mendley (NIH/NIDDK), Dr. Ivonne Schulman (NIH/NIDDK), Ms. Neha Shah (NIH/NIDDK), Dr. Kenneth Wilkens (NIH/NIDDK), and Dr. David Wilson (NIH/Tribal Health Research Office). Workshop presenters, moderators, and facilitators included Dr. Kimberly Jacob Arriola, Dr. Arleen Brown, Dr. Danya Keene, Dr. Marshall Chin, Dr. Keith Norris, Dr. Milda Saunders, Dr. Nwamaka Eneanya, Dr. Rudy Rodriquez, Dr. Winfred Williams, Dr. Janice Lea, Dr. Dinushika Mohottige, Dr. Neil Powe, Dr. Ebele Umeukeje, Dr. Carmen Hardin, Dr. Rachel Patzer, Dr. Lilia Cervantes, Dr. Deidra Crews, Dr. Claudia Camacho, Ms. Dawn Edwards, Dr. Patrick Gee, Dr. Katina-Lindsey Lang, Dr. Elisa Gordon, Dr. Derek Griffith, Dr. Marva Moxey-Mims, Dr. Donald Wesson, Dr. Thomas LaVeist, Dr. Ann Bullock, Dr. Charles McCulloch, Dr. Tom Greene, Dr. Richard Landis, Dr. Jennifer Gassman, Dr. Delphine Tuot, Dr. Guofen Yan, Dr. Tanjala Purnell, and Mr. Richard Knight.

Footnotes

Published online ahead of print. Publication date available at www.jasn.org.

Author Contributions

L. Cervantes, D. Crews, D. Edwards, R. Knight, K. Norris, R. Patzer, N. Powe, and T. Purnell conceptualized the study; D. Crews and K. Norris were responsible for the project administration; L. Cervantes, D. Crews, R. Knight, K. Norris, and R. Patzer wrote the original draft; and L. Cervantes, D. Crews, D. Edwards, R. Knight, K. Norris, R. Patzer, N. Powe, and T. Purnell reviewed and edited the manuscript.

Supplemental Material

This article contains the following supplemental material online at http://jasn.asnjournals.org/lookup/suppl/doi:10.1681/ASN.2022080890/-/DCSupplemental.

Supplemental Figure 1. National Institute on Minority Health and Health Disparities Research Framework.

References

  • 1.Jones CP: Levels of racism: A theoretic framework and a gardener’s tale. Am J Public Health 90: 1212–1215, 2000 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2.Williams DR, Lawrence JA, Davis BA: Racism and health: Evidence and needed research. Annu Rev Public Health 40: 105–125, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 3.Bailey ZD, Krieger N, Agénor M, Graves J, Linos N, Bassett MT: Structural racism and health inequities in the USA: Evidence and interventions. Lancet 389: 1453–1463, 2017 [DOI] [PubMed] [Google Scholar]
  • 4.Braveman PA, Arkin E, Proctor D, Kauh T, Holm N: Systemic and structural racism: Definitions, examples, health damages, and approaches to dismantling: Study examines definitions, examples, health damages, and dismantling systemic and structural racism. Health Aff 41: 171–178, 2022 [DOI] [PubMed] [Google Scholar]
  • 5.Link BG, Phelan J: Social conditions as fundamental causes of disease. J Health Soc Behav Spec No: 80–94, 1995 [PubMed] [Google Scholar]
  • 6.Mohottige D, Diamantidis CJ, Norris KC, Boulware LE: Racism and kidney health: Turning equity into a reality. Am J Kidney Dis 77: 951–962, 2021 [DOI] [PubMed] [Google Scholar]
  • 7.Arriola KJ: Race, racism, and access to renal transplantation among African Americans. J Health Care Poor Underserved 28: 30–45, 2017 [DOI] [PubMed] [Google Scholar]
  • 8.Norris K, Nissenson AR: Race, gender, and socioeconomic disparities in CKD in the United States. J Am Soc Nephrol 19: 1261–1270, 2008 [DOI] [PubMed] [Google Scholar]
  • 9.Hall YN: Social determinants of health: Addressing unmet needs in nephrology. Am J Kidney Dis 72: 582–591, 2018 [DOI] [PubMed] [Google Scholar]
  • 10.Nicholas SB, Kalantar-Zadeh K, Norris KC: Socioeconomic disparities in chronic kidney disease. Adv Chronic Kidney Dis 22: 6–15, 2015 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11.Powe NR: Let’s get serious about racial and ethnic disparities. J Am Soc Nephrol 19: 1271–1275, 2008 [DOI] [PubMed] [Google Scholar]
  • 12.Norton JM, Moxey-Mims MM, Eggers PW, Narva AS, Star RA, Kimmel PL, et al. : Social determinants of racial disparities in CKD. J Am Soc Nephrol 27: 2576–2595, 2016 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 13.Braveman P, Arkin E, Orleans T, Proctor D, Plough A: What is Health Equity? And What Difference Does a Definition Make? Princeton, NJ, Robert Wood Johnson Foundation, 2017 [Google Scholar]
  • 14.Smedley BD, Stith AY, Nelson AR: Institute of Medicine, Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal treatment: Confronting Racial and Ethnic Disparities in Healthcare, Washington, DC, National Academies Press, 2003 [PubMed] [Google Scholar]
  • 15.Rodriguez RA, Sen S, Mehta K, Moody-Ayers S, Bacchetti P, O’Hare AM: Geography matters: relationships among urban residential segregation, dialysis facilities, and patient outcomes. Ann Intern Med 146: 493–501, 2007 [DOI] [PubMed] [Google Scholar]
  • 16.Prakash S, Rodriguez RA, Austin PC, Saskin R, Fernandez A, Moist LM, et al. : Racial composition of residential areas associates with access to pre-ESRD nephrology care. J Am Soc Nephrol 21: 1192–1199, 2010 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 17.Golestaneh L, Cavanaugh KL, Lo Y, Karaboyas A, Melamed ML, Johns TS, et al. : Community racial composition and hospitalization among patients receiving in-center hemodialysis. Am J Kidney Dis 76: 754–764, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18.Saunders MR, Lee H, Alexander GC, Tak HJ, Thistlethwaite JR Jr, Ross LF: Racial disparities in reaching the renal transplant waitlist: Is geography as important as race? Clin Transplant 29: 531–538, 2015 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 19.Hicken MT, Katz R, Crews DC, Kramer HJ, Peralta CA: Neighborhood social context and kidney function over time: The multi-ethnic study of atherosclerosis. Am J Kidney Dis 73: 585–595, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 20.Eneanya ND, Crews DC: “Place, not race”: A focus on neighborhood as a risk factor for hospitalizations in patients receiving maintenance hemodialysis. Am J Kidney Dis 76: 749–751, 2020 [DOI] [PubMed] [Google Scholar]
  • 21.Rosenblatt AM, Crews DC, Powe NR, Zonderman AB, Evans MK, Tuot DS: Association between neighborhood social cohesion, awareness of chronic diseases, and participation in healthy behaviors in a community cohort. BMC Public Health 21: 1611, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 22.Purnell TS, Simpson DC, Callender CO, Boulware LE: Dismantling structural racism as a root cause of racial disparities in COVID-19 and transplantation. Am J Transplant 21: 2327–2332, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 23.United States Renal Data System: 2021 USRDS Annual Data Report: Epidemiology of Kidney Disease in the United States, Bethesda, MD, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, 2020 [Google Scholar]
  • 24.Reese AM, Cooper D: Making spaces something like freedom. ACME: An International Journal for Critical Geographies 20: 450–459, 2021 [Google Scholar]
  • 25.Banerjee T, Crews DC, Wesson DE, Dharmarajan S, Saran R, Ríos Burrows N, et al. ; CDC CKD Surveillance Team : Food insecurity, CKD, and subsequent ESRD in US adults. Am J Kidney Dis 70: 38–47, 2017 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 26.Inker LA, Eneanya ND, Coresh J, Tighiouart H, Wang D, Sang Y, et al. ; Chronic Kidney Disease Epidemiology Collaboration : New creatinine- and cystatin c-based equations to estimate GFR without race. N Engl J Med 385: 1737–1749, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 27.Eneanya ND, Yang W, Reese PP: Reconsidering the consequences of using race to estimate kidney function. JAMA 322: 113–114, 2019 [DOI] [PubMed] [Google Scholar]
  • 28.Norris KC, Eneanya ND, Boulware LE: Removal of race from estimates of kidney function: First, do no harm. JAMA 325: 135–137, 2021 [DOI] [PubMed] [Google Scholar]
  • 29.Diao JA, Wu GJ, Taylor HA, Tucker JK, Powe NR, Kohane IS, et al. : Clinical implications of removing race from estimates of kidney function. JAMA 325: 184–186, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 30.Delgado C, Powe NR: Resolving the debate: The future of using race in estimating kidney function. Adv Chronic Kidney Dis 29: 5–16, 2022 [DOI] [PubMed] [Google Scholar]
  • 31.Zelnick LR, Leca N, Young B, Bansal N. Association of the estimated glomerular filtration rate with vs without a coefficient for race with time to eligibility for kidney transplant. JAMA Netw Open 4: e2034004, 2021 [DOI] [PMC free article] [PubMed]
  • 32.Kucirka LM, Grams ME, Balhara KS, Jaar BG, Segev DL: Disparities in provision of transplant information affect access to kidney transplantation. Am J Transplant 12: 351–357, 2012 [DOI] [PubMed] [Google Scholar]
  • 33.Cervantes L, Fischer S, Berlinger N, Zabalaga M, Camacho C, Linas S, et al. : The illness experience of undocumented immigrants with end-stage renal disease. JAMA Intern Med 177: 529–535, 2017 [DOI] [PubMed] [Google Scholar]
  • 34.Cervantes L, Tuot D, Raghavan R, Linas S, Zoucha J, Sweeney L, et al. : Association of emergency-only vs standard hemodialysis with mortality and health care use among undocumented immigrants with end-stage renal disease. JAMA Intern Med 178: 188–195, 2018 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 35.Burrows NR, Zhang Y, Hora I, Pavkov ME, Sheff K, Imperatore G, et al. : Sustained lower incidence of diabetes-related end-stage kidney disease among American Indians and Alaska Natives, Blacks, and Hispanics in the US, 2000–2016. Diabetes Care 43: 2090–2097, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 36.Nguyen OK, Vazquez MA, Charles L, Berger JR, Quiñones H, Fuquay R, et al. : Association of scheduled vs emergency-only dialysis with health outcomes and costs in undocumented immigrants with end-stage renal disease. JAMA Intern Med 179: 175–183, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 37.Cervantes L, Tong A, Camacho C, Collings A, Powe NR: Patient-reported outcomes and experiences in the transition of undocumented patients from emergency to scheduled hemodialysis. Kidney Int 99: 198–207, 2021 [DOI] [PubMed] [Google Scholar]
  • 38.Conway PT, Knight R: Legitimization and incorporation of patient preferences: The arrow that hit the Achilles heel of status quo kidney care. Clin J Am Soc Nephrol 16: 645–647, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 39.Kalantar-Zadeh K, Li PK, Tantisattamo E, Kumaraswami L, Liakopoulos V, Lui SF, et al. ; World Kidney Day Steering Committee : Living well with kidney disease by patient and care-partner empowerment: Kidney health for everyone everywhere. Patient Educ Couns 105: 243–245, 2022 [DOI] [PubMed] [Google Scholar]
  • 40.Iltis AS, Conell AD, Cooper LA, Gee PO Sr, Jefferson NM, Johnson HA, et al. : Improving kidney disease research in the Black community: The essential role of black voices in the APOLLO Study. Am J Kidney Dis 79: 750–753, 2022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 41.Purnell TS, Calhoun EA, Golden SH, Halladay JR, Krok-Schoen JL, Appelhans BM, et al. : Achieving health equity: Closing the gaps in health care disparities, interventions, and research. Health Aff (Millwood) 35: 1410–1415, 2016 [DOI] [PubMed] [Google Scholar]
  • 42.Jones CP. Confronting Institutionalized Racism. In: Phylon (1960-), Vol. 50, 2002, pp 7–22 [Google Scholar]
  • 43.Kendi IX. How to be an antiracist: One world; 2019.
  • 44.Beech BM, Ford C, Thorpe RJ Jr, Bruce MA, Norris KC: Poverty, racism, and the public health crisis in America. Front Public Health 9: 699049, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 45.Bignall ONR 2nd, Crews DC: Stony the road we trod: Towards racial justice in kidney care. Nat Rev Nephrol 17: 79–80, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 46.Mohottige D, Diamantidis CJ, Norris KC, Boulware LE: Racism and kidney health: Turning equity into a reality. Am J Kidney Dis 77: 951–962, 2021 [DOI] [PubMed] [Google Scholar]
  • 47.Taylor K, Crews DC: Toward antiracist reimbursement policy in end-stage kidney disease: From equality to equity. J Am Soc Nephrol 32: 2422–2424, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 48.Jones CP: Invited commentary: “Race,” racism, and the practice of epidemiology. Am J Epidemiol 154: 299–304, discussion 305–306, 2001 [DOI] [PubMed] [Google Scholar]
  • 49.Ford CL, Griffith DM, Bruce MA, Gilbert KL: Racism: Science & Tools for the Public Health Professional. Washington, DC: American Public Health Association Press, 2020. [Google Scholar]
  • 50.Harding JL, Perez A, Patzer RE: Nonmedical barriers to early steps in kidney transplantation among underrepresented groups in the United States. Curr Opin Organ Transplant 26: 501–507, 2021 [DOI] [PubMed] [Google Scholar]
  • 51.Holmes SM, Hansen H, Jenks A, Stonington SD, Morse M, Greene JA, et al. : Misdiagnosis, mistreatment, and harm - When medical care ignores social forces. N Engl J Med 382: 1083–1086, 2020 [DOI] [PubMed] [Google Scholar]
  • 52.Brown AF, Ma GX, Miranda J, Eng E, Castille D, Brockie T, et al. : Structural interventions to reduce and eliminate health disparities. Am J Public Health 109[S1]: S72–S78, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 53.Clauser SB, Taplin SH, Foster MK, Fagan P, Kaluzny AD: Multilevel intervention research: Lessons learned and pathways forward. J Natl Cancer Inst Monogr 2012: 127–133, 2012 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 54.Patzer RE, Gander J, Sauls L, Amamoo MA, Krisher J, Mulloy LL, et al. ; Southeastern Kidney Transplant Coalition : The RaDIANT community study protocol: Community-based participatory research for reducing disparities in access to kidney transplantation. BMC Nephrol 15: 171, 2014 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 55.Patzer RE, Paul S, Plantinga L, Gander J, Sauls L, Krisher J, et al. ; Southeastern Kidney Transplant Coalition : A randomized trial to reduce disparities in referral for transplant evaluation. J Am Soc Nephrol 28: 935–942, 2017 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 56.Esmail LC, Barasky R, Mittman BS, Hickam DH: Improving comparative effectiveness research of complex health interventions: Standards from the patient-centered outcomes research institute (PCORI). J Gen Intern Med 35[Suppl 2]: 875–881, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 57.Bianchini JA, Akerson VL, Barton AC, Lee O, Rodriguez AJ: Moving the Equity Agenda Forward: Equity Research, Practice, and Policy in Science Education, The Netherlands, Springer, 2012 [Google Scholar]
  • 58.Gordon HSJ: Alaska native subsistence rights: Taking an anti-racist decolonizing approach to land management and ownership for our children and generations to come. Societies (Basel) 12: 72, 2022 [Google Scholar]
  • 59.Ettinger AK, Landsittel D, Abebe KZ, Bey J, Chavis V, Navratil JD, et al. ; Pittsburgh Study Committee Co-Leads : THRIVE conceptual framework and study protocol: A community-partnered longitudinal multi-cohort study to promote child and youth thriving, health equity, and community strength. Front Pediatr 9: 797526, 2022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 60.Rivara FP, Bradley SM, Catenacci DV, et al. : Structural racism and JAMA Network Open. JAMA Netw Open 4: e2120269, 2021 [DOI] [PubMed]
  • 61.Aguilar-Gaxiola S, Ahmed SM, Anise A, et al. : Assessing meaningful community engagement: A conceptual model to advance health equity through transformed systems for health: Organizing committee for assessing meaningful community engagement in health & health care programs & policies, 2022: 2022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 62.Norris KC, Brusuelas R, Jones L, Miranda J, Duru OK, Mangione CM: Partnering with community-based organizations: An academic institution’s evolving perspective. Ethn Dis 17[Suppl 1]: S27–S32, 2007 [PubMed] [Google Scholar]
  • 63.Cooper LA, Purnell TS, Ibe CA, Halbert JP, Bone LR, Carson KA, et al. : Reaching for health equity and social justice in Baltimore: The evolution of an academic-community partnership and conceptual framework to address hypertension disparities. Ethn Dis 26: 369–378, 2016 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 64.Centers for Disease Control: Principles of Community Engagement, 2nd Ed., Atlanta, GA, Centers for Disease Control, 1997 [Google Scholar]
  • 65.Jones L: Commentary: 25 years of community partnered participatory research. Ethn Dis 28[Suppl 2]: 291–294, 2018 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 66.Vargas RB, Jones L, Terry C, Nicholas SB, Kopple J, Forge N, et al. ; Building Bridges to Optimum Health World Kidney Day Los Angeles 2007 Collaborative : Community-partnered approaches to enhance chronic kidney disease awareness, prevention, and early intervention. Adv Chronic Kidney Dis 15: 153–161, 2008 [DOI] [PubMed] [Google Scholar]
  • 67.Nierse CJ, Schipper K, van Zadelhoff E, van de Griendt J, Abma TA: Collaboration and co-ownership in research: Dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expect 15: 242–254, 2012 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 68.Elliott MJ, Allu S, Beaucage M, McKenzie S, Kappel J, Harvey R, et al. : Defining the scope of knowledge translation within a national, patient-oriented kidney research network. Can J Kidney Health Dis 8: 20543581211004803, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 69.Gutman T, Tong A, Howell M, Dansie K, Hawley CM, Craig JC, et al. : Principles and strategies for involving patients in research in chronic kidney disease: Report from national workshops. Nephrol Dial Transplant 35: 1585–1594, 2020 [DOI] [PubMed] [Google Scholar]
  • 70.Jansen L, Maina G, Horsburgh B, Kumaran M, Mcharo K, Laliberte G, et al. : Co-developed indigenous educational materials for chronic kidney disease: A scoping review. Can J Kidney Health Dis 7: 2054358120916394, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 71.Duncanson E, Dansie K, Gutman T, Tong A, Howell M, Jesudason S, et al. : ‘Knowledge is power’: A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology. Nephrology (Carlton) 25: 379–383, 2020 [DOI] [PubMed] [Google Scholar]
  • 72.McPherson LJ, Hamoda RE, Patzer RE: Measuring patient knowledge of kidney transplantation: An initial step to close the knowledge gap. Transplantation 103: 459–460, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 73.Tuttle KR, Knight R, Appelbaum PS, Arora T, Bansal S, Bebiak J, et al. ; Kidney Precision Medicine Project : Integrating patient priorities with science by community engagement in the kidney precision medicine project. Clin J Am Soc Nephrol 16: 660–668, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 74.Elliott MJ, Goodarzi Z, Sale JEM, Wilhelm LA, Laupacis A, Hemmelgarn BR, et al. : Perceived significance of engagement in research prioritization among chronic kidney disease patients, caregivers, and health care professionals: A qualitative study. Can J Kidney Health Dis 5: 2054358118807480, 2018 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 75.Duff D, Jesudason S, Howell M, Hughes J: A partnership approach to engage Aboriginal and Torres Strait Islander peoples with clinical guideline development for chronic kidney disease. Renal Soc Australas J 14: 84–88, 2018 [Google Scholar]
  • 76.Finlay J, Wilson T, Javaheri PA, Pearson W, Connolly C, Elliott MJ, et al. : Patient and physician perspectives on shared decision-making for coronary procedures in people with chronic kidney disease: A patient-oriented qualitative study. CMAJ Open 8: E860–E868, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 77.Donald M, Beanlands H, Straus S, Ronksley P, Tam-Tham H, Finlay J, et al. : Preferences for a self-management e-health tool for patients with chronic kidney disease: Results of a patient-oriented consensus workshop. CMAJ Open 7: 713–720, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 78.Baay S, Hemmelgarn B, Tam-Tham H, Finlay J, Elliott MJ, Straus S, et al. : Understanding adults with chronic kidney disease and their caregivers’ self-management experiences: A qualitative study using the theoretical domains framework. Can J Kidney Health Dis 6: 2054358119848126, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 79.Umeukeje EM, Wild MG, Maripuri S, Davidson T, Rutherford M, Abdel-Kader K, et al. : Black Americans’ perspectives of barriers and facilitators of community screening for kidney disease. Clin J Am Soc Nephrol 13: 551–559, 2018 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 80.Cukor D, Cohen LM, Cope EL, Ghahramani N, Hedayati SS, Hynes DM, et al. : Patient and other stakeholder engagement in patient-centered outcomes research institute funded studies of patients with kidney diseases. Clin J Am Soc Nephrol 11: 1703–1712, 2016 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 81.Hamilton CM, Strader LC, Pratt JG, Maiese D, Hendershot T, Kwok RK, et al. : The PhenX Toolkit: Get the most from your measures. Am J Epidemiol 174: 253–260, 2011 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 82.Guha C, Viecelli AK, Wong G, Manera K, Tong A: Qualitative research methods and its application in nephrology. Nephrology (Carlton) 26: 755–762, 2021 [DOI] [PubMed] [Google Scholar]
  • 83.Jeffries N, Zaslavsky AM, Diez Roux AV, Creswell JW, Palmer RC, Gregorich SE, et al. : Methodological approaches to understanding causes of health disparities. Am J Public Health 109[S1]: S28–S33, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 84.Howe CJ, Bailey ZD, Raifman JR, Jackson JW: Recommendations for using causal diagrams to study racial health disparities [published online ahead of print]. Am J Epidemiol 2022. 10.1093/aje/kwac140 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 85.LaVeist TA: Disentangling race and socioeconomic status: A key to understanding health inequalities. J Urban Health 82[Suppl 3]: iii26–iii34, 2005 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 86.La Veist TA: Why we should continue to study race...but do a better job: An essay on race, racism and health. Ethn Dis 6: 21–29, 1996 [PubMed] [Google Scholar]
  • 87.Chin MH, Clarke AR, Nocon RS, Casey AA, Goddu AP, Keesecker NM, et al. : A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. J Gen Intern Med 27: 992–1000, 2012 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 88.Tummalapalli SL, Mendu ML: Value-based care and kidney disease: Emergence and future opportunities. Adv Chronic Kidney Dis 29: 30–39, 2022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 89.Vassalotti JA, Boucree SC: Integrating CKD into US primary care: Bridging the knowledge and implementation gaps. Kidney Int Rep 7: 389–396, 2022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 90.Shen JI, Erickson KF, Chen L, Vangala S, Leng L, Shah A, et al. : Expanded prospective payment system and use of and outcomes with home dialysis by race and ethnicity in the United States. Clin J Am Soc Nephrol 14: 1200–1212, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 91.Collins FS, Adams AB, Aklin C, Archer TK, Bernard MA, Boone E, et al. ; NIH UNITE : Affirming NIH’s commitment to addressing structural racism in the biomedical research enterprise. Cell 184: 3075–3079, 2021 [DOI] [PubMed] [Google Scholar]
  • 92.Khazanchi R, Crittenden F, Heffron AS, Cleveland Manchanda E, Sivashanker K, Maybank A: Beyond declarative advocacy: moving organized medicine and policy makers from position statements to anti-racist praxis. Health Affairs Blog. Available at: https://www.healthaffairs.org/do/101377/hblog20210219 2021
  • 93.Doubeni CA, Simon M, Krist AH: Addressing systemic racism through clinical preventive service recommendations from the US Preventive Services Task Force. JAMA 325: 627–628, 2021 [DOI] [PubMed] [Google Scholar]
  • 94.Maybank A, De Maio F, Lemos D, Derige DN: Embedding racial justice and advancing health equity at the American Medical Association, Am J Med 135: 803–805, 2022 [DOI] [PubMed] [Google Scholar]
  • 95.Sarkar S: Health System Investments to Address Social and Economic Determinants of Health: The Healthcare Anchor Model, Baltimore, MD, Johns Hopkins University, 2020 [Google Scholar]

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Supplemental Data
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