Implementation and dissemination of an African American popular opinion model to improve lupus awareness: an academic–community partnership

Abstract

Objective

Lupus is a chronic, autoimmune disease that disproportionately affects African Americans. We adapted the Centers for Disease Control and Prevention’s Popular Opinion Leader model to implement an intervention tailored for African American individuals that leverages an academic-community partnership and community-based social networks to disseminate culturally appropriate lupus education.

Methods

Academic rheumatologists, social scientists, and researchers in Boston, MA and Chicago, IL partnered with local lupus support groups, community organizations, and churches in neighborhoods with higher proportions of African Americans to develop curriculum and recruit community leaders with and without lupus (Popular Opinion Leaders; POLs). POLs attended four training sessions focused on lupus education, strategies to educate others, and a review of research methods. POLs disseminated information through their social networks and recorded their impact, which was mapped using a geographic information system framework.

Results

We trained 18 POLs in greater Boston and 19 in greater Chicago: 97% were African American, 97% were female; and the mean age was 57 years. Fifty-nine percent of Boston POLs and 68% of Chicago POLs had lupus. POLs at both sites engaged members of their social networks and communities in conversations about lupus, health disparities, and the importance of care. Boston POLs documented 97 encounters with 547 community members reached. Chicago POLs documented 124 encounters with 4083 community members reached.

Conclusions

An adapted, community-based POL model can be used to disseminate lupus education and increase awareness in African American communities. Further research is needed to determine the degree to which this may begin to reduce disparities in access to care and outcomes.

Systemic lupus erythematosus (“lupus”) is a chronic, autoimmune disease that can result in extensive multiorgan damage.¹ There are approximately 1.5 million individuals diagnosed with lupus in the United States, with a higher prevalence in racial/ethnic minorities.² African Americans are 2–3 times more likely to develop lupus than white individuals.^3,4 In addition, African Americans are more likely to develop lupus at a younger age,⁵ experience a higher burden of adverse outcomes,⁶ and have higher rates of mortality as compared to white Americans.⁷ Experiences of racial discrimination,⁸ lack of social support after diagnosis, poor access to and quality of subspecialty care, socioeconomic status, and neighborhood poverty contribute to the higher frequency of adverse outcomes and disease damage in African American lupus patients.^9,10

“Lupus Conversations” was designed to forge academic–community partnerships in two US cities to develop and implement a community-based lupus health education program in predominately African American communities. While no single intervention alone will eliminate racial/ethnic disparities, disseminating lupus education among African American individuals and promoting early and sustained access to care are important initial steps. We adapted the Centers for Disease Control and Prevention Popular Opinion Leader (POL) model to develop a community-based intervention to increase awareness and understanding of lupus in greater Boston, MA and Chicago, IL African American communities. The POL model draws from the social network and diffusion of innovation (DOI) theories to engage community leaders and their social networks in conversations that will promote positive healthcare-seeking norms and behaviors.¹¹ The social network theory stresses the importance of using social connections to promote better health.¹² DOI seeks to explain how, why, and at what rate new ideas spread.¹³ The MONARCAS program similarly used a POL model to disseminate lupus-related information to Hispanic neighborhoods in Chicago.¹⁴

Disparities in outcomes for African American patients with lupus have been documented in Chicago, where African American patients are more likely to experience care fragmentation than white patients and have more disease damage and worse outcomes compared with those who receive centralised care at one healthcare facility.¹⁵ Focus groups conducted among predominantly African American lupus patients living in medically underserved areas in Boston also revealed an unmet need for lupus education and social support.¹⁶ We aimed to 1) forge sustainable academic–community partnerships, 2) train community leaders about lupus to facilitate community-based dissemination of information through social networks, and 3) to qualitatively understand perceptions of and barriers to lupus education in our communities.

Methods

Participants

Given the increased burden of lupus and related adverse outcomes in African American patients, we aimed to enroll primarily African American individuals. We developed and implemented our intervention in two US cities that differ geographically and demographically: Boston, MA in the Northeast and Chicago, IL in the Midwest. The population estimate as of July 1, 2018 for Boston was 694,583 people, 25.3% of whom identify as Black or African American; and for Chicago, 2,705,994 people where 30.5% identify as Black or African American.¹⁷ To recruit participants in Boston and Chicago, our team of academic rheumatologists, social scientists, and disparities researchers partnered with community leaders, local lupus support groups comprised primarily of women of African descent, community organizations, churches, and local lupus foundations (Figure 1). Local community leaders led our recruitment efforts in greater Boston and Chicago neighborhoods. In Boston, we specifically focused on the neighborhoods of Roxbury, Dorchester, and Mattapan, which have a high proportion of African American residents, and 40% of those residents live under the federal poverty level (FPL).¹⁸ In Chicago, we focused on Washington Heights, Morgan Park, Englewood, and Roseland, which range from 55–96% African American, with between 18 and 31% of the community living under the FPL.⁶ While we aimed to include African American individuals from predominantly African American neighborhoods, we did not exclude any individual based on race/ethnicity or home address. Participants were eligible if they were ≥18 years and English-speaking. Since our goal was to broadly disseminate lupus-related information, we recruited individuals with and without lupus diagnoses including community leaders and caregivers. This project was approved by the Partners Healthcare Institutional Review Board (IRB); the protocol was reviewed and considered not to be human subjects research by the Northwestern IRB.

Figure 1.

The network of academic and community partners in Boston and Chicago involved in Popular Opinion Leader recruitment and curriculum development. CCHERS, Inc.: The Center for Community Health Education Research and Service, Inc.

Participant training

Training of participants (Popular Opinion Leaders or POLs) began in February 2018, and four weekly 2–3 hour sessions were held over a 1-month period. In Boston, training was conducted at Sportsmen’s Tennis and Enrichment Center, a community-based advocacy, health, and wellness center in Dorchester, MA. In Chicago, training was conducted at Trinity United Church of Christ in Chicago, IL and at a local government office. The sessions were facilitated by a team of academic rheumatologists, a social scientist, and research staff. Boston-based participants were also able to call in to a live-streaming webinar. We provided each POL with an information sheet about the benefits and risks of participating; the need for written informed consent was waived by the Partners Healthcare IRB.

A four-part POL training curriculum was developed collaboratively with academic rheumatologists, social scientists, and community stakeholders in Boston and Chicago. The POL training curriculum was composed of four modules: (1) Site-Specific POL Introduction and Lupus Signs and Symptoms, (2) Principles of the POL Model, (3) Community Research Methods and Data Collection, and (4) Practice Case Scenarios and Discussions. (The corresponding author will provide complete curriculum materials upon request.) The training sessions were interactive and included group discussions. POLs were provided with a resource binder that included the PowerPoint slides used during the training as well as lupus fact sheets and support resources. POLs were also given conversation-starter palm cards (Appendix 1), which included a succinct list of lupus signs and symptoms and a prompt, “Ask me, I can tell you about my lupus journey” or “Someone I care for has lupus, what should I do?” to help facilitate the exchange of information between the POLs and members of their social networks. In addition, the cards included contact information for the Lupus Foundation of America (LFA, Boston site) and the Lupus Society of Illinois (LFA, Chicago site). The goal of these cards was not to provide a comprehensive resource about lupus but rather to help initiate the conversation the POL would have with community members and to provide a source for more detailed information if indicated. After completion of the training sessions, POLs disseminated information through their social networks and communities. Each POL was given a US$50 gift card per session and an additional $25 for attending an optional refresher session. Qualitative data from discussions during each session at the Boston site were manually recorded separately by three investigators (CRP, CL, CHF) and content was reviewed and combined. At the Chicago sessions, notes were recorded by the facilitator (PC).

Dissemination

POLs were asked to complete an encounter form for each venue that they visited to disseminate lupus-related information for the 6 months following the training. These forms included the encounter date, address, number of people spoken to at the location, and the information shared. POLs also provided qualitative feedback regarding their interactions. The LFA and the LSI were asked to document any calls to the number on the distributed palm cards received from individuals in the Boston and Chicago areas.

Analyses

Demographic survey data from both sites were organized by frequency. Qualitative data from participants at the training sessions and from dissemination feedback were analyzed thematically (CRP, CHF, CL, PC) after independent content review of combined detailed notes by two investigators (CRP and CHF). Dissemination form data were used to generate geographic information system (GIS) tracking maps that assessed the level of dissemination and POL involvement in both cities.

Results

POL characteristics

Eighteen POLs were trained in the Boston area and 19 in greater Chicago (Table 1): 92% self-identified as African American, the mean age was 57 years, and 61% of the Boston POLs and 68% of the Chicago POLs had lupus. No POL participant formally withdrew. In Boston, two-thirds of the POLs attended three or four training sessions and six (33.3%) attended two sessions either in person or via live-streaming webinar. POLs who were unable to attend either in person or via webinar were given a USB with the PowerPoint slides and the recorded presentations. In Chicago 85% of the POLs attended three out of four training sessions. Those who were unable to attend in person were provided the curriculum materials by the facilitator.

Table 1.

Characteristics of the Popular Opinion Leaders in Boston and Chicago

POL characteristics: N (%)	Boston (N = 18)	Chicago (N = 19)
Sex
Female	17 (94.4%)	19 (100%)
Male	1 (5.6%)	–
Age
<35	1 (5.6%)	1 (5.3%)
35–45	2 (11.1%)	3 (15.8%)
46–55	4 (22.2%)	5 (26.3%)
56–65	7 (38.9%)	5 (26.3%)
>65	4 (22.2%)	5 (26.3%)
Race
African American	16 (88.9%)	18 (94.7%)
White	1 (5.6%)	–
Native American/African American	1 (5.6%)	–
Education
High school or less	3 (16.7%)	4 (21.1%)
Associate’s	2 (11.1%)	–
Bachelor’s	4 (22.2%)	5 (26.3%)
Master’s/doctorate	9 (50%)	10 (52.6%)
Lupus diagnosis
Lupus	11 (61.1%)	13 (68.4%)
No lupus	7 (38.9%)	6 (31.6%)
Relative with lupus
Yes	7 (38.9%)	12 (66.7%)
No	8 (44.4%)	7 (38.9%)
Previous training as a health promoter
Yes	9 (50%)	1 (5.3%)
No	8 (44.4%)	16 (84.2%)
Participated in previous lupus educational training
Yes	7 (38.9%)	2 (10.5%)
No	10 (55.5%)	14 (73.7%)
Conducted presentations and other community-based activities
Yes	8 (44.4%)	13 (68.4%)
No	9 (50%)	4 (21.1%)
Member of a gym/sports club
Yes	8 (44.4%)	9 (47.4%)
No	9 (50%)	10 (52.6%)
Member of a faith-based organization
Yes	9 (50%)	15 (78.9%)
No	8 (44.4%)	3 (15.8%)

Dissemination data

During a 6-month period, 56% of the trained Boston POLs and 74% of the Chicago POLs returned completed dissemination forms. POLs in Boston documented 97 encounters with 547 community members reached (Table 2 and Figure 2); 70% (204/292) of the greater-Boston conversations were in the targeted Boston neighborhoods of Roxbury, Dorchester, and Mattapan. Additionally, a Boston POL organized an educational seminar in Lagos, Nigeria with >200 individuals in attendance. POLs in Chicago documented 124 encounters with 4083 community members reached (Table 3 and Figure 3); 39% (728/1887) of the Chicago conversations were in the targeted neighborhoods of Washington Heights, Morgan Park, Englewood, and Roseland. POLs engaged community members in conversations about lupus and the importance of early and sustained care, at churches (18), schools (10), community fairs (8), health centers (7), and grocery stores (5). Two POLs engaged members of their social network through their social media pages and phone interactions.

Table 2.

Dissemination data collected by Boston Popular Opinion Leaders (POLs), N.18, in the 6 months following training with a documented 97 encounters giving a total of 547 community members reached

City/neighborhood*	No. of POLs	No. of people spoken to	Venues
Dorchester	6	87	Western Union, Lupus Support Group, elementary school, Neighborhood Development Coalition, health center, hair salon, market, sub shop, convenience store, library, gym, grocery store, community resource fair, park meeting, golf course, Grand Lodge, Medical Wellness Center, parking lot, National Alliance on Mental Illness
Jamaica Plain/West Roxbury	3	43	Baby shower, AME Church, ice cream shop, coffee shop, health center, laundromat, whole foods grocery store, League of United Latin American Citizens
Boston/South Boston	3	45	Sleep Clinic, City of Boston Police Captain’s Meeting, Lupus Educational Seminar, City of Boston Health Department, medical center, CVS, Santander Bank, post office
Mattapan	3	15	Church, barbershop
Buzzards Bay	1	17	Apartment building, library
Quincy	1	2	Dentist
Milton	1	8	Café, apartment building
Springfield	1	35	Prayer breakfast
Lakeville	1	10	Friend’s home
Mashpee	1	1	Tribal Council

^*Venues for Cambridge (N = 1) and Brockton (N = 2) were not reported.

POLs reported dissemination data for New York (N = 2), Connecticut (N = 1), Rhode Island (N = 1), New Hampshire (N = 1), Virginia (N = 1), Florida (N = 1), and Lagos, Nigeria (N = 1); these are included in the total number (547) of community members reached.

Figure 2.

GIS map of greater Boston displaying the Popular Opinion Leaders’ (POLs) dissemination in the community. Each dot represents the degree of POL involvement and message saturation in a Boston neighborhood.

Table 3.

Dissemination data collected by Chicago Popular Opinion Leaders (POLs), N = 19, in the 6 months following training. Chicago POLs documented 124 encounters giving a total of 4083 community members reached

City/neighborhood*	No. of POLs	No. of people spoken to	Venues
Blue Island	1	20	Blue Island Medical Center
Burnham	2	5	Home
Calumet City	2	186	Library
Champaign	1	28	Baptist convention
Chicago	62	1887	7th District Police District, beauty shop, bowling alley, center for seniors, church, elementary school, Ellis Park, Loop, home, Mccormick Place, temple, health center, post office, Residents Association, The Reaching Back Foundation’s 2018 Salute to the Phenomenal Woman, Train Station, UIC Forum/Main Hall Small Business Expo, University of Illinois Hospital, WKKC Radio 89.3 FM, work, park
Chicago Heights	5	165	State college, Franciscan Health Fitness Lupus display
Country Club Hills	1	3	Home
Dolton	7	53	Home, Paratransit Station, Taffe Trucking
Evergreen Park	1	12	Chi Tung
Flossmoor	1	15	Homewood Flossmoor High School
Hammond	2	90	Bowling alley, train station
Harvey	1	58	Bus terminal
Hazel Crest	2	31	Homes
Homewood	6	207	Café, community center, country club, clubhouse, Walmart
Itasca	1	213	Church of Christ Women’s Conference Health Expo.
Markham	2	19	Christ Temple Church
Matteson	11	350	Marshalls, community center, public library, Baptist church, Starbucks
Oak Forest	1	10	Valley Kingdom Ministries International
Olympia Fields	1	22	Bicentennial Park-South Suburbs Walk
Orland Park	2	15	Medical group, Whole Foods
Park Forest	1	32	AARP Presentation
Riverdale	1	72	School
Robbins	4	37	Middle school, library, Southeast Ceda
Schererville	1	2	Mexican restaurant
South Holland	2	28	South Suburban College
Springfield	2	485	Springfield Capital Building, University of Illinois at Springfield
Tinley Park	1	38	DuPage Medical Group

AARP: America Association of Retired Persons.

Figure 3.

GIS map of greater Chicago displaying the Popular Opinion Leaders’ (POLs) dissemination in the community. Each dot represents the degree of POL involvement and message saturation in a Chicago neighborhood.

Both the LFA and the LSI reported that they did not observe a significant increase in call volume. The LFA received 21 calls during the time frame of this project (March 2018–October 2018), as compared to 17 calls during the same time frame the previous year. One caller said that they were calling from the Boston area, and none of the callers referenced the palm cards or Lupus Conversations project. The LSI received 1188 calls from Chicago area codes during the time frame of the project, as compared to 1196 calls during the same time frame the previous year.

Themes from training discussions

Several key themes recurred during the training session discussions. These included challenges with patient-provider communication, potential environmental influences on lupus development, racial and gender discrimination in healthcare, and the importance of support networks for lupus patients.

Patient–provider communication

POLs felt that providers needed to improve the way that they communicated information about the meaning of test results, medications, and the term “lupus remission” to patients. Several Boston POLs remarked that having rheumatologists involved in the training sessions was beneficial because it provided a unique opportunity for patients to engage with a physician outside of a clinical setting and candidly discuss their concerns. Additionally, POLs wanted to receive more information about environmental exposures such as proximity to waste sites and pesticides, which may influence the risk of lupus.

Discrimination

POLs discussed the effects of race and discrimination on access to and quality of healthcare in their cities. Several POLs in Boston stated that gender discrimination and stereotypes about women often posed a greater issue for them, as lupus patients, than racial discrimination, and many POLs vocalized the challenges and discrimination that they faced when interacting with male doctors. POLs in Boston also had a conversation about racial dynamics in the city and several POLs raised concerns about the meaning of a specific “African-American Popular Opinion Leader Model” given the significant heterogeneity of the black community by language, nationality, culture, and socioeconomic status.

Social support

POLs discussed the importance of support networks for lupus patients. Several POLs felt that their participation in the POL training and dissemination process was empowering and helped their lupus self-management. Others reiterated that lupus patients, especially those that have been newly diagnosed, need to receive continued support and education about navigating the healthcare system, choosing rheumatologists, asking their physicians questions, and enrolling in clinical trials.

Themes from dissemination feedback

POLs vividly recounted conversations within their social networks. Key themes included the need for improved lupus education, the difficulty of engaging youth and men in lupus support networks, socioeconomic barriers to lupus education, and the disproportionate suffering of African Americans.

Need for lupus education

While few POLs reported encounters with individuals who were completely unaware of lupus, several POLs indicated that there were significant gaps in knowledge about the signs, symptoms, and psychosocial effects of lupus. POLs provided anecdotes of encounters with individuals who thought that discoid lupus was contagious or that lupus was related to cancer or AIDS. Additionally, several POLs reported that the clinical staff (e.g., receptionist, triage nurses) they encountered during visits to their doctors often lacked basic knowledge about lupus and its clinical manifestations. POLs also emphasized the need for educational resources appropriate for school-aged children and adolescents, as well as the need for educational materials in different languages.

Challenges engaging men and youth

POLs stated that male lupus patients were often poorly represented or left out from lupus-centered events and initiatives due to the perception that lupus is “a woman’s disease.” Similarly, POLs reported that young people often declined invitations to attend support group meetings or to discuss their disease. Several POLs described observing a sense of invincibility that accompanies youth, which makes it difficult for young people to embrace the realities of their illness. POLs also reported that since the disease can be disfiguring, some young people simply do not like to interact with older patients because they are scared to see the way the disease manifests over time.

Socioeconomic barriers

Several Boston POLs reported that they encountered members of the community who were not receptive to the project and did not want to engage in conversations about lupus because it would add to their stress and anxieties. Community members expressed that when dealing with more immediate issues such as poverty and hunger, learning about an incurable disease did not take precedence. Similarly, POLs noted that a few community members stated that they preferred not to go to the doctor because receiving a lupus diagnosis would become just one more thing for them to worry about. Inability to afford healthcare and medication once receiving a lupus diagnosis was also reported by POLs as a major barrier to engaging in positive health-seeking behaviors.

Disproportionate suffering of African Americans

POLs at both sites noted that a few of the community members they encountered felt overburdened by the number of issues that affect the African American community and did not want to hear about yet another illness that disproportionately affects African American individuals. Specifically, some community members wanted to know why African American individuals always seem to experience a higher burden of disease and worse outcomes than other racial/ethnic groups.

Discussion

The goal of this intervention was to leverage academic-community partnerships to develop and implement a culturally competent educational intervention to spread awareness of lupus in predominantly African American communities in the greater Boston and Chicago areas. We were able to demonstrate that within a short period of time, a POL model can be adapted to disseminate lupus-related education. We engaged and trained members of the target communities, the majority of whom were African American, to assume the role of lupus POLs within their social networks. In both cities there were high levels of lupus education dissemination and POL involvement at diverse venues, and in neighborhoods with significant proportions of African Americans.

One strength of this work was the ability to develop and implement this intervention in two distinct cities. Not surprisingly, we observed some differences between the Boston and Chicago sites. Primarily, there was a significant difference in the magnitude of message saturation between the two cities, with Chicago POLs reporting encounters with more than five times as many community members as Boston POLs. Chicago POLs were more likely to engage in widespread dissemination to large groups, such as radio broadcasts, whereas Boston POLs were more likely to engage in direct conversations with small groups of individuals. A higher percentage of Chicago POLs also belonged to faith-based organizations and were more likely to disseminate information at large church-group meetings and conferences. In contrast, Boston POLs belonged to a rich support group network—two participants are leaders of established support groups—and several of the POLs reported that they used the materials to mentor and support newly diagnosed patients.

We also observed differences between the Boston and Chicago sites in the attitudes of the POLs to the POL training sessions. Whereas Boston POLs eagerly engaged in long discussions centered around their experiences with lupus and their conversations with their social networks, they were hesitant to return data collection forms, which likely resulted in the underreporting of Boston dissemination efforts. In contrast, the Chicago POL training sessions more closely adhered to the pre-specified curriculum.

Consistent with previous studies that have highlighted the need for improved lupus education,^16,19,20 POLs in both cities reported significant gaps in lupus knowledge. This further underscores the importance of developing and testing community-based lupus educational interventions. POLs also described several challenges and barriers to their dissemination. Both groups of POLs discussed the challenges that race, gender, and socioeconomic status present to healthcare access, quality, and treatment adherence, which have been discussed extensively in the literature.^{9,10,15,21–24} In Boston, POLs described the effect that poverty has not only on an individual’s ability to access care, but also on their willingness to learn about a new disease or participate in an educational intervention.

There were several limitations to this work. Our goal was to develop a broadly applicable intervention that could be tailored to the needs of different cities and populations. However, there were challenges and ethical considerations when designing an “African American model.” The ethics of a specific African American intervention were previously discussed by Faith et al., who stated that tailoring an intervention toward a homogeneous study population is justified if it is responsive to the specific health needs and priorities of a disadvantaged population.²⁵ However, several POLs expressed concerns about the meaning of “African American” in the context of this intervention, and the possible exclusion of black Americans, who do not identify as African American. There is significant heterogeneity of the black population in the United States by culture, country of origin, religion, language, and socioeconomic status, and we acknowledge that the curriculum materials may not be fully representative. In Boston, where there are significant Haitian and Cape Verdean populations, providing curriculum and dissemination materials in different languages will be an important next step.

Additionally, we were limited by challenges recruiting male and young adult POLs. POL feedback on the difficulty of engaging youth and men in conversations, as well as the challenges that we faced recruiting youth and men to participate in this study, demonstrates that targeted educational interventions are still necessary to improve healthcare delivery and health outcomes among harder to reach demographic groups. POLs expressed the need for an educational curriculum specifically tailored to school-aged children and their families who might face different concerns and challenges. Several studies have demonstrated the effectiveness of peer support interventions to improve attitudes and functioning in chronically ill children and adolescents.^26,27 Similarly, a previous study conducted among Latinx lupus patients found that high-school students experienced the most significant increase in lupus knowledge after participating in an adapted POL training program.¹⁴ Additionally, several studies have investigated the biological and clinical manifestations of male SLE,^28–30 and men may experience a more aggressive disease course.^31–34 Thus, increasing lupus education and awareness among men is especially critical to mitigate the effects of misdiagnosis and delayed care.

Another limitation was that we did not formally transcribe the POL training sessions at either the Boston or Chicago sites. The decision not to record POL training sessions helped to ensure that we maintained trust and facilitated honest thoughts and confidentiality with our community partners and POL participants. In Boston, three of the investigators independently took copious notes at each of the training sessions, which they combined and then reviewed together after each session. Finally, our ability to assess the impact of the dissemination was limited and beyond the scope of our primary aims. While it was clear that the POLs actively disseminated lupus information in their communities, the data that we were able to obtain from the lupus foundations did not suggest that the palm cards changed their call volumes. However, we were unable to track the number of individuals who may have visited their websites, which were also listed on the palm cards, or accessed other online resources because of the intervention. In addition, POLs described in detail the oftentimes extensive conversations they had with members of their social networks about lupus and it is possible that after these exchanges, there was no immediate need for additional information. Assessment of whether community-based education expedited the time to seek rheumatology care in African American communities will be an important next step. However, this is challenging in large, metropolitan areas as there are many possible centers where care could be obtained. Therefore, the longer-term impact of this intervention on improving early access to rheumatology care and ultimately, on reducing disparities in outcomes could not be assessed at this juncture.

This work also has significant strengths. Although this was not specifically designed as a peer support intervention, Boston POLs shared that the intervention was a particularly useful tool to promote peer support and mentorship to newly diagnosed patients. In addition, we were able to forge a new connection between the Boston and Chicago POLs based on their shared experiences with this project. POLs with a lupus diagnosis shared that both the training and dissemination process increased their own knowledge of lupus, made them feel more empowered to make decisions about their health, strengthened their support network and gave them a voice. Our results complement and extend findings of prior studies where a peer support intervention can improve chronic disease self-management and highlight the role of the intervention as a support and advocacy tool. Several studies have shown that peer mentoring programs are associated with improved disease knowledge, self-management, social coping, and quality of life for both the mentor and mentee among patients with chronic diseases.^35,36 A previous qualitative study conducted among women with SLE also found that peer mentoring programs can promote self-empowerment through reciprocal exchanges between the mentor and mentee.³⁷

This intervention also supports previous literature highlighting the importance of active community involvement in health education and improvement interventions.^38,39 By involving our community partners at every stage of the development and implementation process we were able to garner committed and active leadership from community members, and leverage their role as learners, teachers, and researchers. The training topics and materials were particularly successful at actively engaging POLs, especially in Boston where the training sessions often ran over the allotted 2 hours due to POL discussions. As a result, we were able to collect rich qualitative data that provided a unique opportunity to evaluate perceptions of lupus and the educational intervention in the target communities. The widespread dissemination across the two sites also highlights the power and importance of the community voice and social networks to disseminate information.

Carrying out parallel interventions in two cities also strengthened this project by demonstrating both the flexibility and adaptability of such an intervention and allowed us to gain a more diverse perspective. We were able to note differences, tailor the curriculum accordingly, and collect data that can be used to inform future educational interventions. Additionally, we have shown the potential for international reach of this intervention with dissemination of the project in Nigeria.

Our next steps include further dissemination of this intervention in different US cities and continued tailoring of the POL curriculum based on community and POL feedback. Programs in other cities should aim to increase the participation of youth, men, and diverse black immigrant populations. Future research is needed to determine the long-term effects of this dissemination at the community level, notably the degree to which interventions administered through academic–community partnerships improve early access to care and ultimately, begin to reduce racial/ethnic disparities in lupus-related health outcomes.