Identifying High‐Impact Solutions to Address Racial and Ethnic Health Disparities in Lupus: A Consensus‐Based Approach

Abstract

Objective

We conducted formative research aimed at identifying solutions that address inequitable health outcomes in lupus due to adverse social determinants of health (SDoH).

Methods

We conducted a search for keywords, which provided insights into potential solutions and initiatives underway. An advisory panel of lupus experts iteratively reviewed the list of literature‐scoped solutions in working sessions, filling knowledge gaps, which allowed for further defining and classifying solutions based on area of focus, feasibility, and impact. Seven‐in‐depth semistructured discussions and a modified Delphi survey approach were leveraged to align the advisory panel based on feasibility, impact, and costs of the proposed solutions.

Results

Thirty‐three solutions were identified and classified into four key categories: financial safety net, patient education and shared decision‐making, physician education, and other solutions. High‐impact solutions that were prioritized included the following: “collecting granular information like patient‐reported outcomes to provide personalized care and accelerate development of new products,” “expanding Medicaid coverage via infrastructure,” and “supporting people living with lupus in applying and getting approval for disability.”

Conclusion

Addressing health and health care disparities linked to negative SDoH is a key goal in the management of lupus, as disparities in outcomes can be stark. Increasing the visibility of potential solutions and aligning the community on top priorities can enable more efficient and effective contributions to health care equity and ultimately better health outcomes for people living with lupus.

INTRODUCTION

Systemic lupus erythematosus (SLE) is a chronic, heterogeneous autoimmune disease characterized by systemic inflammation and potential for irreversible multiorgan damage. Although advancements in care since the 1940s have markedly improved 5‐ and 10‐year survival rates to over 90%, ¹ substantial disparities persist in health outcomes and death. Lupus mortality rates are disproportionately higher in historically marginalized racial and ethnic groups within the United States. ² Specifically, Black/African American, Hispanic/Latino, and Indigenous populations face remarkably higher rates of poor health outcomes and mortality compared to White patients. ²

SIGNIFICANCE & INNOVATIONS.

• This work demonstrates a systematic, comprehensive approach to identifying priority interventions that have the potential to help mitigate inequitable health outcomes among individuals with lupus, particularly those most impacted by adverse social determinants of health.

• Our findings underscore that facilitating access to disability benefits, bolstering access to treatment, ensuring early detection of lupus risk factors, and implementing nurse or social worker–led strategies to enhance follow‐up care are pivotal for addressing the multilayered impact of adverse social determinants of health on lupus disease management and outcomes, especially among historically marginalized communities in the United States.

Despite the recent approval of new therapies, such as anifrolumab, belimumab, and voclosporin, which has expanded treatment options for SLE, cutaneous lupus erythematosus, and lupus nephritis, access to these innovations remains inequitable due to lack of economic resources among minority groups. Structural barriers, such as socioeconomic instability and broader negative social determinants of health (SDoH), hinder equitable distribution of these advancements, leaving vulnerable populations unable to benefit equally. ³

Socioeconomic status (SES) plays a pivotal role in shaping health disparities in SLE. Low SES restricts housing choices, ⁴ often confining individuals to neighborhoods marked by higher crime rates, environmental toxins, and food insecurity. ⁵ Exposure to low SES exacerbates disease progression and results in greater cumulative damage, contributing to higher mortality rates in low SES populations. ⁶ Additionally, reliance on public health insurance in the United States often leads to fragmented and inconsistent care, limiting access to specialists and safe, comprehensive therapies. ⁷ Such discontinuity is especially detrimental in conditions such as lupus nephritis, in which unmanaged disease significantly increases the risk of irreversible organ damage, kidney failure, cardiovascular complications, and other adverse outcomes.

Neighborhood‐level disadvantages, as reflected by higher Area Deprivation Index (ADI) scores, further compound disparities. High ADI scores are associated with increased disease severity and damage in conditions such as discoid lupus erythematosus and lupus nephritis. ⁸ , ⁹ Without targeted interventions addressing these structural inequities, patients from historically marginalized communities remain at heightened risk for morbidity, mortality, and reduced quality of life.

Although the link between negative SDoH, low SES, and poor lupus outcomes is well recognized, ¹⁰ , ¹¹ , ¹² systematic efforts to identify and prioritize actionable solutions remain lacking. Currently, there is no comprehensive road map for strategies to address these challenges. Instead, public health and medical professionals often work in fragmented ways, tackling health disparities without coordination. Given the complexity and scale of SDoH‐related issues in lupus, engaging experts with diverse knowledge of the disease is essential for creating impactful solutions.

The Lupus Addressing Health Inequities in Minorities (Lupus AIM) Advisory Panel was established to address this gap. Through a structured Delphi process, the panel identified key causes of lupus‐related health disparities and proposed targeted solutions to reduce them. This article presents a prioritized, expert‐informed road map for addressing SDoH in lupus, which were presented in a previous article. ¹⁰ By aligning these efforts across the lupus community, we aim to close existing health equity gaps and improve the quality of life for individuals living with lupus.

METHODS

Overview of the Lupus AIM program

The Lupus AIM program is composed of multiple phases to systematically identify health disparities and prioritize solutions addressing health disparities in SLE. Phase 1 focused on identifying challenges, whereas phases 2 and 3 involved solution generation and prioritization, which are the focus of this consensus statement. In phase 1, the Lupus AIM Advisory Panel conducted a systematic literature review to identify major epidemiologic and social determinants that negatively impact lupus outcomes. This review was initially conducted in January 2021 and updated in 2023. Relevant research was identified through PubMed using the following search terms: [“lupus” or “lupus nephritis” or “systemic lupus erythematosus”] AND [“disparities” or “social determinants of health” or “inequity”] OR [[“race” or “ethnicity”] AND [“prevalence” or “outcome” or “treatment” or “therapy”]]. The review was limited to English‐language human studies published between 2011 and 2023. Findings from the literature review informed a scientific statement published ¹⁰ in 2023.

Building on these findings, a modified Delphi approach was employed in phases 2 and 3 to achieve expert consensus on priority solutions for addressing SDoH and reducing racial and ethnic health disparities in lupus outcomes. Delphi methods are widely used in health sciences to obtain structured input from experts. ¹³ The approach used here included four key steps ¹⁴ , ¹⁵ :

1. Panel identification: convene a multidisciplinary panel of experts in lupus and health disparities.

2. Problem identification: define key factors driving health disparities in lupus, focusing on social inequities and barriers to access.

3. Iterative refinement: conduct iterative rounds of solution development and refinement based on panel input.

4. Consensus determination: prioritize solutions based on expert consensus.

This approach differed from the traditional Delphi method because anonymity of participants was not a goal. Participant anonymity offers both benefits and drawbacks ¹⁶ and was not deemed necessary in this study given the productive dialogue expected from advisory panel meetings and workshops.

Composition of the Lupus AIM Advisory Panel

The Lupus AIM Advisory Panel was convened in October 2020 to address health disparities in SLE among racial and ethnic minority communities in the United States. The panel comprises 13 members, including 2 patients, 6 clinician‐scientists, 3 research professors, and 2 representatives from nonprofit and voluntary health organizations. Members were selected for their expertise in lupus, health disparities, and public health, with recruitment led by Dr Karen H. Costenbader, a researcher in the field. Panel diversity ensured that multiple perspectives were represented, enabling a comprehensive approach to identifying solutions. This study was reviewed by the Advarra, Inc Institutional Review Board and deemed exempt.

Delphi methodology for solution identification and prioritization

A four‐round iterative Delphi process was implemented to develop and refine solutions for reducing health disparities in lupus outcomes as outlined in Table 1. Each round involved structured discussions, workshops, and surveys to iteratively identify, refine, and prioritize solutions.

Table 1.

Lupus AIM solution identification and prioritization research and consensus process^*

Round	Date(s)	Activity/activities	Output(s)
Round 1a: Solution identification and generation	May 2021 to August 2022	Advisory panel meetings Solution item generation	42 solutions
Round 1b: Solution identification and generation		Preliminary prioritization exercise	Prioritized list of 22 solutions
Round 2: Solution refinement	September 2023 to January 2024	Literature search 1:1 discussion with industry experts	34 solutions, categorized by topic
Round 3: Solution Prioritization Survey 1	January 2024	Advisory panel workshop Solution prioritization survey (feasibility, impact, cost)	Solution Prioritization Survey 1 rating for each of the 34 solutions Refined list of 33 solutions
Round 4: Solution Prioritization Survey 2	April 2024	Solution prioritization survey (impact)	Solution Prioritization Survey 2 results for each of the 33 solutions Final prioritized list of top 12 solutions based on impact

^*Lupus AIM, Lupus Addressing Health Inequities in Minorities.

The solution identification and generation phase involved a series of advisory panel meetings from May 2021 to August 2022. During these sessions, the panel identified structural factors contributing to racial and ethnic inequities in lupus outcomes and access barriers exacerbating health disparities. These discussions resulted in a preliminary list of 42 solutions. The panel conducted a prioritization exercise, ranking each solution based on its potential impact on addressing disparities and its feasibility for implementation by the Lupus Foundation of America (LFA) using a 1 (low) to 3 (high) scale. Combined scores for feasibility and impact were used to rank solutions, with the top ~50% forming an initial prioritized list of 22 solutions.

The solution refinement phase, conducted between September 2023 and January 2024, updated the list to reflect recent advancements in industry and academic thought. This phase incorporated input from structured 30‐minute interviews with seven industry experts and members of the Lupus AIM Advisory Panel as well as insights from a panel workshop. Feedback from these activities resulted in an updated list of 34 solutions, integrating previously prioritized solutions from 2022, findings from 2023 research, and new ideas generated during discussions. These solutions were categorized into four themes: financial safety net, patient education and shared decision‐making, physician education, and other solutions.

The Solution Prioritization Survey 1 was conducted during a final workshop in January 2024. Panel members re‐evaluated the updated solutions based on their impact, feasibility, and financial cost using a 1 (low) to 3 (high) scale. Qualitative feedback from the workshop was also incorporated, leading to a refined list of 33 solutions (4 solutions consolidated into 2 solutions, 2 solutions updated, and 1 new solution added). Quantitative data from the survey were analyzed in Microsoft Excel to calculate mean scores for each metric.

In Solution Prioritization Survey 2, conducted online in April 2024, panel members validated the updated solutions by reassessing their impact on addressing disparities in lupus outcomes. Using the final list of 33 solutions, members rated each solution's impact on a scale of 1 (low) to 3 (significant/major impact). Survey 2 measured consistency in response, as all respondents had also participated in survey 1. Consensus was determined using a two‐factor process assessing both the percentage of panel members who rated a solution as having significant/major impact (score of 3) and the mean impact rating.

Both surveys were conducted anonymously; although panel members knew the identity of other panelists, ratings for specific solutions were collected independently using an online survey. Panelists did not know others’ individual responses. Data from Solution Prioritization Survey 2 was analyzed in Microsoft Excel to determine the final priority solutions.

Consensus determination

Consensus was defined as follows:

1. Consensus criterion: >50% of the panel rated a solution as having significant/major impact (score of 3).

2. High‐impact criterion: the mean impact rating for a solution exceeded the median rating across all solutions.

Solutions meeting both criteria were identified as priority interventions for addressing disparities in lupus outcomes. This structured and proven process ensured a robust and transparent methodology for prioritization. ¹⁷

The second survey identified 12 priority solutions based on both consensus (>50% of panel members rating the solution as having a significant/major impact) and a mean impact rating exceeding the median across all solutions (2.36). The results are summarized in Table 2 (sorted by level of consensus). Large language models were used minimally for checking spelling and grammar errors within the article.

Table 2.

Results of Lupus AIM Advisory Panel solution prioritization exercise (in order of consensus)^*

Ranking	Category	Solution	Consensus, %	Mean rating
1	Other	Support people living with lupus in applying and getting approval for disability	82	2.73
2	Financial safety net	Third‐party grants and funding for lupus initiatives	64	2.64
2	Education and shared decision‐making	Aim to increase screening for lupus risk factors in high‐risk communities and increase early access to health care	64	2.64
2	Physician education	Employ nurse and social worker–guided resource identification and interview to enhance patient follow‐up visits	64	2.64
3	Financial safety net	Create resources that will help patients and providers locate patient‐level financial assistance and other programs supporting care‐related costs for commercially insured patients	64	2.45
3	Education and shared decision‐making	Provide education regarding pregnancies and fetal death in diverse communities with lupus	64	2.45
3	Education and shared decision‐making	Provide nonmedical support for un(der)insured patients navigating the health care system through creating resources to complement clinical education	64	2.45
3	Physician education	Strengthen the social care aspect of lupus in addition to the health care aspect by leveraging social workers and CHWs and integrating social workers with practices	64	2.45
4	Physician education	Provide comprehensive lupus education to frontline providers practicing in underresourced communities	55	2.55
5	Financial safety net	Expand Medicaid coverage via an infrastructure bill by lobbying	55	2.45
5	Other	Leverage government resources and coalitions for funding opportunities and collaborations	55	2.45
5	Education and shared decision‐making	Multilingual education resources created by native speakers of other languages (ie, not just Spanish)	55	2.45

^*CHW, Community Health Worker; Lupus AIM, Lupus Addressing Health Inequities in Minorities.

RESULTS

Rank 1 priority solution

The most impactful solution was identified as follows:

1. Supporting individuals with lupus in navigating and securing disability benefits

This solution received a mean rating of 2.73, with 82% of the panel agreeing it would have a significant impact on reducing disparities in lupus outcomes. The complex process of applying for disability benefits can hinder access for many, and resources such as LFA's “Applying for Social Security Disability” webpage (https://www.lupus.org/resources/what‐to‐know‐about‐social‐security‐disability‐insurance) provide critical guidance to improve approval rates.

Rank 2 priority solutions

Three solutions were ranked equally as the second‐highest priority, each receiving a mean impact rating of 2.64, with 64% panel consensus on their potential to address disparities:

1. Expanding third‐party grants and funding for lupus treatments, exemplified by initiatives such as the Patient Navigator Grant Program by Aurinia, to enhance treatment affordability

2. Increasing screening for lupus risk factors in high‐risk communities to facilitate earlier diagnosis and health care access

3. Leveraging nurse and social worker–guided resource identification during follow‐up visits to provide additional support, including community‐focused and health‐related resources

Rank 3 priority solutions

Four solutions ranked as the third priority, with a mean impact rating of 2.45 and 64% panel consensus. However, the panel expressed greater variability in their assessments, with some members considering these solutions to have limited impact:

1. Developing patient‐level financial assistance resources by building on initiatives such as LFA's “Financial Assistance Resources” webpage, the Lupus Research Alliance's Financial Resource Center, and the Patient Access Network Foundation's SLE Medicine Assistance Program

2. Enhancing education on pregnancy and fetal death risks in diverse lupus populations to address maternal health disparities

3. Providing nonmedical support for underinsured patients, such as through LFA's “Ask a Health Educator” program, to complement clinical care and help patients navigate the health care system

4. Strengthening the social care aspect of lupus management by incorporating social workers and leveraging programs such as the National Institutes of Health Integrated Care Management Program.

Rank 4 priority solution

The fourth priority, with 55% panel consensus and a mean impact rating of 2.55, was the following:

1. Providing comprehensive lupus education to frontline providers in underresourced communities

Rank 5 priority solutions

Three solutions were ranked as the fifth priority, each with 55% panel consensus but a lower mean impact rating of 2.45, reflecting mixed opinions on their potential impact:

1. Expanding Medicaid coverage through advocacy for legislative initiatives such as infrastructure bills to improve treatment access for low‐income populations

2. Using government resources and coalitions to secure additional funding opportunities (no specific examples identified)

3. Developing multilingual educational resources, such as GSK's Patient Learning and Community Education Hub, to address racial and ethnic health disparities in lupus outcomes.

DISCUSSION

Using a modified Delphi process, a multidisciplinary panel of health equity experts from the Lupus AIM Advisory Panel prioritized 12 solutions to address SDoH contributing to racial and ethnic disparities in lupus outcomes. Through iterative rounds of solution nominations, structured feedback, surveys, and a comprehensive literature review, the panel reached consensus on solutions spanning four key areas: improving financial safety nets, enhancing physician education, advancing patient education and shared decision‐making, and addressing miscellaneous challenges categorized as “other.” The diversity of these solutions underscores the broad scope of SDoH factors that, if left unaddressed, negatively impact health outcomes in SLE.

The top 12 priority solutions (Table 1) span all four thematic categories: financial safety net, patient education and shared decision‐making, physician education, and other solutions. Patient education and shared decision‐making emerged as the most represented category, accounting for 33% (4 of 12) of the prioritized solutions despite representing only 24% (7 of 33) of the comprehensive solutions. This suggests that the panel viewed these solutions as particularly impactful in addressing health disparities. Financial safety net solutions accounted for 25% of the prioritized solutions, consistent with their representation in the comprehensive list. Physician education and other solutions were slightly underrepresented in the priority list, making up 25% and 17%, respectively, compared to 30% and 21% in the comprehensive list. These patterns highlight the panel's focus on patient‐centric interventions.

The panel identified supporting individuals with lupus in applying for and securing disability benefits as the most impactful and highly feasible solution, with 82% consensus and a mean impact rating of 2.73. This solution addresses a critical need for the most vulnerable populations, particularly those with severe symptoms that limit employability. Resources such as LFA's “Applying for Social Security Disability” webpage were identified as playing a key role in facilitating this process. Financial solutions also ranked highly, including third‐party grants and funding programs such as the Patient Navigator Grant Program and Lupus Copay Assistance Program. These initiatives aim to reduce the financial burden of lupus care, particularly for underserved populations, which represents a major need in the lupus community and, when addressed, has implications for improving health outcomes. ¹⁸ Panelists emphasized the importance of extending financial support to cover care‐related costs, even for patients with commercial insurance. Timely diagnosis and early intervention were identified as pivotal for reducing disparities. Solutions such as increased screening for lupus risk factors in high‐risk communities and improving early access to care were prioritized. The prioritization of this solution aligns with the current observation that it takes, on average, six years and four physicians to receive a definite lupus diagnosis. ¹⁹ This problem is the most severe in underresourced communities. African Americans with lupus are 10 times more likely than White individuals to live in highly disadvantaged neighborhoods, ²⁰ where limited access to primary care and preventive services exacerbates health inequities. This lack of early intervention contributes to the more severe disease manifestations observed shortly after diagnosis in these populations. ²¹ Interventions such as Medicaid expansion, leveraging government resources for funding opportunities, and creating multilingual resources beyond Spanish received lower consensus. Panelists, however, expressed concerns regarding the feasibility of these recommendations, thereby casting doubt on their potential for immediate impact. Although these solutions address critical systemic issues, their complexity, resource demands, and the current political climate may have influenced their lower prioritization.

This study represents the first systematic effort to prioritize solutions targeting SDoH‐related disparities in lupus outcomes using a rigorous modified Delphi process. The inclusion of a multidisciplinary panel with expertise in lupus and health equity from across the United States ensured diverse perspectives. The iterative methodology facilitated inclusive exploration of potential interventions, allowing the panel to refine and prioritize actionable, feasible recommendations. Additionally, the integration of a systematic literature review added robustness to the findings, and the panelists’ extensive experience in domestic and international research on lupus disparities bolstered the study's credibility.

The relatively small size of the panel may limit the generalizability of the findings. Although the panel included representation from the West Coast, most members were based in the Southeast and Northeast, potentially biasing the results due to underrepresentation from other US regions, such as the Midwest or rural areas. Solutions for lupus management in these underrepresented regions may require different emphases; for instance, rural communities often face significant scarcities of rheumatology specialists and greater travel burdens, potentially necessitating a greater reliance on telehealth initiatives, mobile health units, or enhanced roles for primary care physicians in comanaging SLE; rural residence has also been independently associated with adverse outcomes, such as an increased risk of myocardial infarction hospitalization in patients with SLE, ²² and may involve delays in diagnosis. ²³ It is important to note, however, that the panel's geographic makeup aligns with the current distribution of lupus specialist concentrations and academic rheumatology centers in the United States. Furthermore, these represented regions correspond with areas of high lupus prevalence and where significant health disparities are extensively documented. In addition, several panel members possess dedicated expertise and focus their research on traditionally underrepresented and underserved populations, including Indigenous communities, who experience a high burden of lupus and significant barriers to care, as well as individuals residing in rural settings. Their contributions were invaluable in helping to extrapolate findings and consider the applicability of proposed solutions to diverse contexts beyond their immediate geographic locations. Although the regional emphasis is acknowledged as a limitation, these factors related to regional differences in patient distribution, as well as specific panelist expertise, provide important context. Furthermore, one panelist was unable to participate in both prioritization surveys, and their insights are not reflected in the final consensus. The use of a modified Delphi process, including a three‐point rating scale rather than a traditional binary scale, posed methodologic challenges. Although this approach captured nuanced opinions, determining consensus was more complex and required alternative analytical methods (as detailed in the Methods section). Additionally, the study included limited input from patients, whose perspectives are essential for understanding the real‐world impact of the proposed solutions (see Supplemental Document 1 for additional details on this perspective). Future work should incorporate more robust patient voices to validate and refine these recommendations.

This rigorous data and expert consensus–driven study identified 12 priority solutions to address SDoH‐related disparities in lupus outcomes, emphasizing the importance of patient empowerment, financial support, and early intervention. These findings provide a road map for addressing health inequities in racially and ethnically diverse populations with lupus that can guide subsequent work to assess optimal next steps, responsible parties, and metrics for success. Future efforts should integrate patient perspectives to ensure that these solutions align with their needs.

AUTHOR CONTRIBUTIONS

All authors contributed to at least one of the following manuscript preparation roles: conceptualization AND/OR methodology, software, investigation, formal analysis, data curation, visualization, and validation AND drafting or reviewing/editing the final draft. As corresponding author, Dr. Buie confirms that all authors have provided the final approval of the version to be published and takes responsibility for the affirmations regarding article submission (eg, not under consideration by another journal), the integrity of the data presented, and the statements regarding compliance with institutional review board/Declaration of Helsinki requirements.

ROLE OF THE STUDY SPONSORS

Genentech, Inc; AstraZeneca PLC; Mallinckrodt Pharmaceuticals; Novartis, Inc; Biogen; EMD Serono; GlaxoSmithKline; and Bristol Meyers Squibb had no role in the study design or in the collection, analysis, or interpretation of the data, the writing of the manuscript, or the decision to submit the manuscript for publication. Publication of this article was not contingent upon approval by Genentech, Inc; AstraZeneca PLC; Mallinckrodt Pharmaceuticals; Novartis, Inc; Biogen; EMD Serono; GlaxoSmithKline; and Bristol Meyers Squibb.

Supporting information

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