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The Grave Impact of Health Inequities in Systemic Lupus Erythematosus (SLE)
Insights & Best Practices From US Health Equity Experts
This white paper summarizes findings from an initiative to assess barriers to health equity for patients with systemic lupus erythematosus (SLE), featuring insights from a panel of health care stakeholders. The experts identified several areas for improvement in patient access to care as well as the patient-provider relationship and proposed feasible and impactful initiatives to overcome barriers and ensure equity for all patients.
By Donna Finale1
1UCB, Inc.
Introduction
Health equity has become a vital issue over the past few years, driven in part by the COVID-19 pandemic and greater awareness of social injustices. Health care stakeholders across the care continuum, including providers, payers, and drug manufacturers, are prioritizing health equity to ensure that all patients, regardless of race, ethnicity, gender, age, or socioeconomic status, have access to life-saving treatments.
Pharmaceutical companies such as UCB are investing in new roles to enhance early clinical development, diversity in clinical trials, and a sustainability strategy that prioritizes scientific innovation and access to medications as critical factors in ensuring the future of the organization and the health of the populations they serve. A commitment to these efforts upholds UCB's reputation in addition to improving economic and clinical outcomes and patient experience.
Health disparities can impact clinical outcomes and access, presenting a barrier as pharmaceutical companies launch new medications. This is especially true for diseases that disproportionately impact populations of lower socioeconomic status. An example might be the shortage of rheumatologists that accept Medicaid, potentially leaving patients without anyone to prescribe or oversee the use of new medications. Another example is the lack of diversity in clinical trials. Because this research forms the basis for health care treatment decisions, it is important to address factors that may prevent underserved patients from participating in research.
Systemic lupus erythematosus (SLE) exemplifies a disease for which health disparities contribute significantly to disparate health outcomes for certain patient populations. In collaboration with a multidisciplinary team of health equity experts nationwide, UCB initiated an effort to define and understand the barriers to health equity encountered by patients with SLE across the continuum of care and how these barriers propagate adverse health outcomes in this patient population. Additionally, we examined existing health equity programs and interventions being trialed or instituted that could potentially mitigate barriers to care among SLE patients. We combined the qualitative insights obtained from this expert panel with secondary research to identify barriers to care throughout the patient journey and to form an idea of potential solutions.
In this paper, we will share our findings and key insights from payers, policymakers, advocacy executives, health system executives, health care providers, and drug manufacturers regarding their role in improving patient experience and outcomes for high-risk patient populations with SLE. The interventions discussed are in the context of SLE, though they may have wider application to other chronic health conditions.
Figure 1. Difference between equality and equity. Adapted from the Robert Wood Johnson Foundation, 2017
The Importance of Health Equity
Health equity can be an overwhelming topic, and even individuals intimately familiar with the field may confuse key terms and concepts such as equity and equality (Box 1). Equity relates to fairness and justice, dictating that everyone should have an equal opportunity to attain optimal outcomes (Figure 1). Equality refers to the equal distribution of assets without considering disparities between the needs of individuals within a community.
As it relates to health care, health equity refers to all members of a population having a fair and just opportunity to attain their optimal health status.1 The knowledge that health disparities contribute to worse clinical and economic outcomes in certain underserved patient populations is not new; however, health disparities research in the US over the past 2 decades has yielded limited contributions to sustained and widespread improvements.2
Race and ethnicity are most often considered in discussions of health disparities, but these are not the only factors. Socioeconomics, specifically insurance type, often dictate the care a patient will receive and the medications they can obtain. Gender biases also play a role in how patients behave and how they are treated. Experts describe what is known as “the superwoman schema” in which black women, in an effort to prioritize care for their families, do not prioritize their own health, delaying diagnosis and often contributing to preventable outcomes.
Achieving health equity requires the entire health care community to work together to identify, understand and address disparities leading to preventable inequities. It also requires addressing social determinants of health (SDoH) and acknowledging and confronting how factors such as racism, gender bias, and socioeconomic status contribute to potential health disparities.
“Increasing diversity in clinical trials requires bidirectional, multipronged solutions that encompass increasing awareness about the importance of diversity among patients and providers, overcoming barriers related to social determinants of health in clinical trial participation, and engaging with patients in a culturally and linguistically congruent manner throughout the clinical trial process.” Joy Buie, PhD, MSCR, RN
Health Equity in SLE
Black, Hispanic, and Asian women are disproportionately affected by SLE and are at risk of more rapid progression and worse outcomes as compared with White patients with SLE.3 In addition to gender and race, socioeconomic status has been shown to impact both quality of care significantly and overall disease outcomes for patients with SLE. Patients with socioeconomic stressors experience more severe SLE and higher death rates.3 Among these patients, Black women are most disproportionately affected through exposure to environmental stressors and their experience of racial discrimination.3
Some of these inequities are being evaluated to determine if they are modifiable. Disparities in SLE outcomes have been shown to directly correlate with delayed diagnosis and treatment, disrupted access to advanced therapies, and more severe clinical manifestations.4 Many patients with SLE are enrolled in Medicaid or Medicare due to disability and/or economic status.5 Factors such as gender, race, and socioeconomic status have been shown to have a significant impact on both quality of care and overall disease outcomes for patients with SLE.
Initiative to Understand and Address Health Disparities in SLE
Manufacturers often map out patient journeys to identify gaps in care. With insights from health equity work streams, they are better able to identify and address SDoH that may be contributing to these gaps.
We began by looking at the US health care landscape to identify gaps in care that could be responsible for differences in outcomes among patients with SLE from various racial and ethnic backgrounds. We then conducted one-on-one interviews with subject matter experts and ultimately pulled the group together for a series of roundtable sessions (see “Expert Panel of Advisors on Health Equity in SLE” for a full list of participants in these sessions). The diverse perspectives and expertise of the group, combined with secondary research, allowed us to begin prioritizing the disparities by impact and feasibility.
After identifying key drivers of health disparities in SLE, we looked at initiatives or interventions currently being tested or implemented to address disparities in health equity that may have potential utility for SLE. We combined the qualitative insights obtained from our expert panel with secondary research to come up with potential solutions.
We identified two key, overlapping risk factors among patients with SLE for experiencing inequities in health care, leading to poorer outcomes: racial or ethnic background (specifically Black, Hispanic, or Asian), and insurance coverage status (uninsured or covered by Medicaid). The drivers of health inequities faced by individuals in these populations were grouped broadly into more tangible systemic drivers, such as Medicaid policies and the fragmented health care system, and less tangible drivers related to implicit and explicit biases that drive patient and physician behaviors. Limited access to care and effective medication for patients with SLE, particularly those on Medicaid, became our priority. Our first stages of research and exploration showed that policies and biases contributed to the inherent inequities in the US health care system.
“If we are to address the needs of our most marginalized patients, we must design systems and interventions that get to the heart of a patient’s SDoH needs.” Irene Blanco, MD, MS
Policy Barriers to Equity in SLE
Black, Hispanic, and Asian patients living with SLE, especially those on Medicaid, report various health system barriers that contribute to disparately poorer health outcomes. We have organized these systemic barriers relating to Medicaid policy and health systems into 3 main categories:
1. access to coverage or insurance,
2. access to specialists, and
3. access to advanced treatments.
Access to Insurance Coverage
Through this work, there has been a recognition that insurance coverage is a main driver of potential disparities. In the US, a large proportion of SLE patients receive their health insurance coverage through Medicaid.5 One study showed that while patients with Medicaid were equally likely to have seen a rheumatologist in the past year as patients with private insurance, patients with Medicaid had traveled farther distances to get care.5 This study concluded that insurance coverage may predict access to care.5 Such barriers to care affect if, when, and how often patients with SLE and Medicaid insurance can access primary care or preventative services in addition to specialist care. Challenges in access to care partially account for the higher rates of acute care use, including both emergency department visits and hospitalizations, among Medicaid patients with SLE.5 Our expert panel notes that access issues exist within commercial plans as well, particularly related to formulary issues such as step edits and high co-payments.
The Affordable Care Act (ACA) expanded Medicaid coverage to nearly all adults with incomes up to 138% of the Federal Poverty Level.6 However, even with expanded coverage, a lack of continuous coverage poses a significant challenge to access to care and treatment. This is because millions of Medicaid beneficiaries lose eligibility each year. Interruption in coverage can be caused by many factors, including minor fluctuations in income, relocation to another area, and the inability to enroll in a timely manner. Enrollment for coverage through the Health Insurance Exchange (HIX) is possible during this period. However, this can disrupt access to an established provider or specialist due to network restrictions, leading to delayed or fragmented care. Re-enrollment for Medicaid coverage is feasible under the ACA, although this may be challenging for some beneficiaries with lower health literacy and limited English proficiency. Frequent fluctuations in income level can lead to “churning” between Medicaid and HIX, contributing further to coverage gaps as beneficiaries transition between insurance types.7
The authors of this paper acknowledge that Medicaid plans are not the same across all cities, states, and regions in the US. We appreciate that there are significant variations in insurance plan coverage based on many factors. We also acknowledge that certain Medicaid plans have better coverage in some areas than some high-deductible plans. Access to care, medications, and services varies dramatically depending on a plan’s strategic commitment to health equity.
“[Healthfirst is] exploring ways to engage with our members and provider partners, as well as other health care stakeholders, ensuring that everyone living with lupus will have the same opportunity and chance at achieving the best health care outcomes and experiences.” Dan Halevy, MD, FASN CPC
Many plans are committed to improving equity, such as Blue Cross Blue Shield (BCBS) of Massachusetts and Healthfirst in New York. BCBS of Massachusetts is a pioneer in advancing health equity by partnering with the Institute for Healthcare Improvement (IHI) to identify and address inequities and by applying value-based payments to health equity. BCBS of Massachusetts is committed to ensuring access to high-quality, affordable, and equitable care. The not-for-profit health plan is among the first in the nation to create a financial payment model re- warding health systems and physicians for eliminating racial and ethnic inequities in care.8
Access to Specialists
The panel of experts agreed that poor access to specialists could be related to a lack of rheumatologists, a lack of rheumatologists accepting Medicaid, or an unwillingness to take on patients on Medicaid, secondary to implicit and explicit biases among health care providers (HCPs).
According to the American College of Rheumatology (ACR), there is a shortage of rheumatologists in the US.9 It can be challenging to find a rheumatologist, but finding one who accepts Medicaid is an even more significant challenge. A 2021 Medicaid and Chip Payment and Access Commission (MACPAC) report to Congress found that physicians were significantly less likely to accept new Medicaid patients than those with Medicare or private insurance, although acceptance varied by specialty and state.10 The expert panel determined that one key driver of the lack of rheumatologists accepting Medicaid may be implicit biases among HCPs leading to reluctance to see Medicaid patients. This was hypothesized to be driven by, among other factors, a misperception of these patients as challenging to treat and by Medicaid reimbursement.
Medicaid managed care organizations (MCOs) must adhere to state-mandated provider “network adequacy” standards aimed to enable beneficiary access to HCPs.11 These are usually based on minimum provider-to-enrollee ratios, although these may vary quite significantly by state.12 Several states have utilized state-directed payments, permitted under the ACA, to supplement reimbursement rates to induce provider participation in Medicaid care delivery and meet network adequacy standards.13 However, several studies have shown that implementing network adequacy standards has not increased access to providers, especially specialists.14 The 2021 MACPAC report also found that 1 in 6 contracted providers saw zero Medicaid beneficiaries. According to the study, a proportion of these so-called “ghost” physicians in the period assessed remained contracted with the same health plan in the following year, highlighting the infrequent review/updating of network directories and poor enforcement of network adequacy standards.
Finding a rheumatologist who is well-versed in treating SLE and familiar with effective pharmacotherapies can also be difficult. A study of primary care provider (PCP) and specialist participation in managed Medicaid networks in 4 states found that, on average, 25% of PCPs provided 86% of the care, and 25% of specialists provided 75% of the care.15 Delays in scheduling an appointment with a rheumatologist prolong the suffering period and increase the patient’s disease burden. Limited provider availability also contributes significantly to patient-reported lengthy in-clinic wait times and, frequently, to the loss of wages (and/or potential risk to employment) for some patients, which may drive these patients to eschew care entirely or to seek care in an urgent or emergency setting. Limited access to specialists is correlated with less access to medication, as specialists (rheumatologists) are more likely to prescribe disease-modifying drugs for patients with SLE.
“BCollaborative has helped facilitate relationships between drug manufacturers like UCB and payers to leverage the expertise and capabilities of both to cocreate innovative value-based models that are grounded in equity.” Lili Brillstein, MPH
Access to Advanced Treatments
Advanced treatments, such as targeted disease-modifying antirheumatic drugs (DMARDs), have been shown to be more effective in controlling inflammation. However, the use of these treatments in Medicaid patients remains low compared to that in commercially insured patients with SLE. Multiple studies have shown higher rates of persistent high-dose steroid use among minority (Black, Hispanic, Asian) patients compared to White Medicaid patients in multiple inflammatory diseases, including SLE.16 This overuse of steroids may further contribute to disparate adverse outcomes.16 This may be partly due to barriers to sustained access to outpatient care and the need for standardized steroid-tapering regimens from clinical trials with diverse populations.16
Although Medicaid is required to cover all treatments by manufacturers engaging in its mandatory rebate program, frequently state Medicaid and managed Medicaid MCOs have preferred drug lists that impose stringent utilization management requirements, which can hinder access to more expensive advanced treatments.17 In addition, treating physicians may have a prevailing perception that these treatments have poor efficacy in patients of color.18 Additional unconscious biases by providers about a perceived lack of adherence by Medicaid patients may also contribute to observed diminished rates of prescription of these treatments in Medicaid patients.
Solutions to Policy Barriers
Our expert panel identified several ways to improve access to specialists. These include expanding the rheumatology workforce through increased training and active practice, training community health workers in underserved areas, utilization of telehealth, increasing reimbursement, and addressing network adequacy. Of these, increasing reimbursement through value-based care models and addressing network adequacy standards to improve participation in Medicaid were deemed most feasible and impactful.
State Medicaid agencies have increasingly been shifting away from a fee-for-service to a managed Medicaid model. Around 70% of Medicaid patients in the US are covered by a Medicaid MCO.19 State agencies must now transition to establishing higher accountability standards for these MCOs to meet provider access needs. Additionally, there needs to be increased scrutiny and review of MCO network provider directories for the currency of participating providers, as well as any appropriate carrot-and-stick models to incentivize greater provider participation in seeing and delivering care to Medicaid patients.
Value-based models combine the expertise of multiple health care stakeholders to ensure that there is alignment on what needs to be solved, how to solve it, and how to measure the impact. Our expert panel theorized that this type of approach may improve outcomes in diverse populations by incentivizing behaviors that would reduce disparities or inappropriate variations in care. These models may allow physicians to follow their clinical pathway without formulary restrictions and increase reimbursement for providers following best practices for care.
The multisystem nature of SLE and the complexity of its therapies means its management often requires more than one specialist, including a rheumatologist or lupologist, cardiologist, nephrologist, and others, depending on the organ system affected during a flare. However, for most Medicaid patients, their PCP is the central point of contact for their medical care. Most PCPs are not adequately trained in identifying symptoms beyond traditional skin and joint manifestations and in referring patients to the appropriate specialist.
“Quality, standardized data is necessary to empower our potential partners to develop and implement coordinated care models. All-payer claims databases are in some stage of implementation in 48 states and are accessible at little or no cost.” Michael W. Garner, PhD
Specialty care medical homes (SCMH), which are analogous to Patient-Centered Medical Home (PCMH)-models, have proven effective in managing certain special needs populations.20 In an SCMH, a specialist (e.g., rheumatologist or lupologist) is the “principal” care provider who coordinates care with other specialists as well as the patient’s PCP. Academic centers of excellence (COE) provide an opportunity to enhance care delivery based on an SCMH model. Many academic COEs already serve a significant population of underserved patients, and the depth and breadth of services available at a COE could be more effective in addressing the challenge of caring for more complex patients.
“Interventions to address health care inequities include increased availability of interpreter services, increased efforts to recruit and retain underrepresented in medicine health professionals, increased training and education, increased strategies and approaches for investigating patient safety events, and increased leadership accountability.” Esteban Barreto, PhD
Bias-Related Barriers to Equity in SLE
Research has shown that some patients with SLE do not always feel understood by their HCPs.21 Current research largely emphasizes the role of continuing social and economic inequalities in shaping and sustaining mistrust, particularly among populations who experience staggering health disparities. Historic injustices against disadvantaged populations may influence an individual’s perception of their HCP. This can contribute to a lack of patient trust in physicians, particularly in communities of color.
At the same time, physicians can have explicit as well as implicit biases, perceptions, and misconceptions toward some groups of patients.22 Implicit bias refers to attitudes toward or stereotypical associations around a specific social group of people without conscious knowledge. Implicit biases contribute to disparities in health care.22 These biases can result in poorer communication and lead to a lack of trust between patients and providers.23,24 Our expert panel identified cultural and racial differences, as well as a lack of empathy, as two root causes of bias and mistrust between providers and patients.
Cultural and Racial Differences
Physicians’ implicit biases may be particularly associated with Black patients.24 Black patients, more than White patients, report feeling racism in encounters with HCPs. Black patients seen by physicians with higher levels of implicit bias reported significantly lower levels of interpersonal care than patients seen by physicians with lower levels of implicit bias.24
Physicians may also discount patient-reported symptoms in Black patients, particularly pain.26 A nationwide poll by The Undefeated and the Kaiser Family Foundation found that only 50% of African Americans younger than 50 years old say they can trust doctors all or most of the time.27 Patients may feel that providers of another race or ethnicity will not understand them or their disease. This concern is rooted in research; for example, differential manifestations of disease in those with skin of color are more poorly understood by many physicians.28
Some patients may prefer to see a physician of their own race or ethnicity. Racial/ethnic concordance between patients and their physicians has been associated with higher Press Ganey survey scores as well as better patient–physician communication, care, and outcomes.29 They may seek to find cultural common ground to ensure their clinicians understand them. One way to ensure that patients can find physicians who reflect their cultural or racial backgrounds is to prioritize workforce diversity.
“One survey found that well over half of lupus patients report that access to medication and cost of medication are barriers to managing their health at least some of the time. It’s important for physicians to not only understand whether patients are being compliant with a treatment plan but, if they are not, to uncover and address the barriers.” Diane Gross
Empathy and Understanding
Our expert panel also identified a lack of empathy on behalf of HCPs as a potential barrier to equitable health outcomes in patients with SLE. The frustrations for both providers and patients can lead to an environment of mistrust and further potentiate an inequitable system. Our panelists from patient organizations highlighted that improving empathy from all health care stakeholders would be very valuable in building trust and promoting shared decision-making (Figure 2).
Patients find it stressful and overwhelming to find a specialist who accepts their insurance and then to face a potentially lengthy wait time for appointments. Patients on Medicaid have more no-show visits, which may lead to the perception of patients on Medicaid as “difficult.”30 Our expert panel recognized that SDoH affects the ability of patients on Medicaid to keep appointments in myriad ways, including childcare, transportation, time off work, and family obligations. Patients with SLE may have to wait months, drive for hours, and miss full workdays while still dealing with chronic fatigue and debilitating pain.
In turn, patients may misinterpret physician intent and may not realize the pressures and burnout clinicians face. Rheumatologists may feel overwhelmed by the number of patients referred to them. They may feel rushed and unable to devote adequate time to each patient and struggle with the administrative burden and lower reimbursement associated with Medicaid. Patients on Medicaid cannot be billed for missed appointments, presenting an additional burden to providers when combined with low reimbursement. It can frustrate providers when patients don’t adhere to care plans or miss appointments.
Figure 2. Lack of empathy from both the HCP and patients is leading to mistrust and worse outcomes.
Abbreviations: ER, emergency room; HCP, health care provider.
Source: UCB internal market research.
Solutions to Bias-Related Barriers
Even small changes in physician behavior may foster a positive relationship with patients—compassion, integrity, and open communication have all been associated with improved patient trust. Trust and security are fostered when a patient feels they have rapid access to the physician; the patient feels the physician believes their reported symptoms, and the patient has a long-lasting relationship with the provider. The physician should acknowledge the often lengthy, difficult, and frustrating patient journey to diagnosis and adequate care among patients with SLE during their first visit.
One potential solution suggested by our expert panel was to train physicians to adjust their approach to the patient relationship to make the patient feel like an equal partner in making health care decisions. Rather than presuming to know a patient’s goals of care, physicians should ask patients about their treatment goals and desires regarding their medical care and share realistic information with the patient on treatment options, side effects, and disease course. These practices may not only foster trust but also improve treatment adherence.31 Shared decision-making has been tested and replicated in institutions like the Cleveland Clinic and the University of Pittsburgh Medical Center (UPMC) with great results by allowing both patients and providers to share in the accountability of outcomes. UCB is currently examining the value of shared decision-making approaches in dermatology.
When evaluating the patient-provider relationship, physicians may not be consciously aware of the power differential between themselves and their patients and its potential to play out in various patient interactions. Patients are encouraged to advocate for themselves but may not feel empowered to do so. Considering power and its role in the physician-patient relationship should start during medical training and continue through continuing medical education (CME) or maintenance of certification (MOC) longitudinally throughout a medical career.
Our experts felt that education to address conscious and unconscious biases could be one way to improve communication between patients and providers. Some US medical schools now teach about the role of implicit bias in patient care.32 However, fewer than half of US medical schools currently have education geared toward implicit biases in health care, highlighting significant room for improvement.33 Ideally, such training would be required of providers already in practice and provided longitudinally through continuing education as reinforcement.
Finally, creating and disseminating protocols for PCPs regarding work-up, referrals, and treatments for SLE could reduce physician-level variations in the appropriateness or quality of care, reducing the influence of biases or lack of trust. Treat-to-target protocols could come from the American Medical Association (AMA), the American College of Rheumatology (ACR), or other reputed impartial organizations. A phone application may be an ideal way to increase accessibility and allow for regular updates without concern that providers are accessing out-of-date information.
“We must consider that digital communications, while important, do not reach all patients equally. Peer mentorship is one area we are focusing on to improve accessibility of information and patient empowerment.” Edith Williams, PhD
Conclusions
Health inequity can hinder all health care stakeholders’ successful clinical, humanistic, and economic outcomes. It is a multi-factorial problem encompassing many issues and challenges in treating a complex group of patients. Single-point solutions are unlikely to be successful or effective in addressing health inequity. Rather, we plan to utilize a multi-pronged approach toward creating cultural and behavioral changes in health care stakeholders across the spectrum of care, including physicians, patients, policymakers, advocacy groups, and payers. Implementing and scaling these solutions will require a tailored and thoughtful collaborative approach that must address the unique set of challenges faced by different patient subpopulations (Box 2).
UCB has taken the learnings from this workstream to build a health equity strategy to improve outcomes and experience for lupus patients, beginning with a pilot in partnership with the National Minority Health Association (NMHA) and several key patient advocacy groups. These insights will be used for future initiatives to overcome inequities and improve patient care. UCB, in partnership with the NMHA, will kick off a national social media awareness campaign, “Equity for All,” this fall to highlight the burden faced by people living with SLE. We will also pilot community outreach efforts within NYC in partnership with Anca Askanase, MD, Lupus Research Alliance (LRA), Global Healthy Living Foundation (GHLR), HealthFirst, New York State Medicaid, and NMHA. ■
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