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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.

SUBMITTER: Phillip CR

PROVIDER: S-EPMC7237166 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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

Phillip C R CR Mancera-Cuevas K K Leatherwood C C Chmiel J S JS Erickson D L DL Freeman E E Granville G G Dollear M M Walker K K McNeil R R Correia C C Canessa P P Ramsey-Goldman R R Feldman C H CH

Lupus 20191008 12

<h4>Objective</h4>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.<h4>Methods</h4>Academic rheumatologists, social scientists, and researchers in Boston, MA an ...[more]

PMID: 31594456

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Project description:Immune dysregulation in systemic lupus erythematosus (SLE) contributes to increased disease activity. African-American (AA) SLE patients have an increased prevalence of complications from disease flares and end-organ damage that leads to increased morbidity and early mortality. We previously reported alterations in inflammatory and regulatory immune mediator levels prior to disease flare in European American (EA) SLE patients. In the current study, we assessed baseline and follow-up plasma levels of 52 soluble mediators, including innate, adaptive, chemokine, and TNF superfamily members, in AA SLE patients who developed SELENA-SLEDAI defined flare 6 or 12 weeks after baseline assessment. These patients were compared to themselves during a comparable, clinically stable period (SNF, n = 18), or to demographically matched SLE patients without impending disease flare (NF, n = 13 per group). We observed significant (q < 0.05) alterations in 34 soluble mediators at baseline, with increased levels of both innate (IL-1α and type I interferons [IFN]) and adaptive cytokines (Th1-, Th2-, and Th17-type), as well as IFN-associated chemokines and soluble TNF superfamily members weeks before clinical disease flare. In contrast, stable SLE patients exhibited increased levels of the regulatory mediators IL-10 (q ≤ 0.0045) and TGF-β (q ≤ 0.0004). Because heterogeneous immune pathways were altered prior to clinical disease flare, we developed a soluble mediator score that encapsulates all mediators tested. This score is the sum of all log transformed, standardized soluble mediator levels assessed at baseline (pre-flare), weighted by their Spearman correlation coefficients for association with the SELENA-SLEDAI score at time of concurrent flare. While baseline SELENA-SLEDAI scores were similar between flare vs. NF (p = 0.7214) and SNF (p = 0.5387), the SMS was significantly higher in pre-flare SLE patients (Flare vs NF or SNF, p < 0.0001). By capturing alterations in the balance between inflammatory and regulatory mediators associated with SLE pathogenesis, the soluble mediator score approximates the immune status of SLE patients and provides a robust, predictive gauge of impending disease flare.

Project description:BackgroundThis project (named Reinvent) aimed to promote Public Involvement (PI) in health research. Academics worked with a community group, the Eloquent Praise & Empowerment Dance Company, to develop a community partnership with young people from Black African, Asian and Caribbean heritage communities. The goal of this paper is to evaluate the Reinvent project for key learnings on how to engage and build partnerships with young people from Black African, Asian and Caribbean heritage communities.MethodsReinvent developed a steering group which consisted of five young people, one academic, a Race Equality Ambassador and the Director of Eloquent. The steering group co-produced an agenda for two workshops and the evaluation tools used. The content of the workshops included drama exercises, discussions on physical and mental health, nutrition and school-life, short introductions to the concepts of research and PI, and group work to critique and improve a video currently used to promote PI in health research to young people. The evaluation tools included using the 'Cube' evaluation framework, video-blogging and collecting anonymous feedback. Findings The responses to the 'Cube' evaluation framework were positive across all four domains (agenda, voice, contribute change) in both workshops. A few of the young people described having a better understanding of the meaning and practice of PI in a video-blog. The anonymous feedback suggested that the workshops had increased young people's confidence in sharing their thoughts and opinions about health and PI.ConclusionReinvent has shown that academic institutions and young people from an under-served community can partner to co-design workshops and apply evaluation tools. Working with young people in an environment in which they were comfortable, and by researchers joining in with the activities that the young people enjoyed (such as dance), enabled more informal and open conversations to develop. More work is needed to build upon this project so that young people can feel confident and supported to get involved in PI activities relating to research.

Project description:BACKGROUND:The field of dissemination and implementation (D&I) science has grown significantly over recent years. Alongside this, an increased demand for training in D&I from researchers and implementers has been seen. Research describing and evaluating D&I training opportunities, referred to here as 'capacity building initiatives' (CBIs), can help provide an understanding of different methods of training as well as training successes and challenges. However, to gain a more detailed understanding of the evidence-base and how D&I CBIs are being reported in publications, a field-wide examination of the academic literature is required. METHODS:Systematic review to identify the type and range of D&I CBIs discussed and/or appraised in the academic literature. EMBASE, Medline and PsycINFO were searched between January 2006 and November 2019. Articles were included if they reported on a D&I CBI that was developed by the authors (of each of the included articles) or the author's host institution. Two reviewers independently screened the articles and extracted data using a standardised form. RESULTS:Thirty-one articles (from a total of 4181) were included. From these, 41 distinct D&I CBIs were identified which focussed on different contexts and professions, from 8 countries across the world. CBIs ranged from short courses to training institutes to being part of academic programmes. Nearly half were delivered face-face with the remainder delivered remotely or using a blended format. CBIs often stipulated specific eligibility criteria, strict application processes and/or were oversubscribed. Variabilities in the way in which the D&I CBIs were reported and/or evaluated were evident. CONCLUSIONS:Increasing the number of training opportunities, as well as broadening their reach (to a wider range of learners), would help address the recognised deficit in D&I training. Standardisation in the reporting of D&I CBIs would enable the D&I community to better understand the findings across different contexts and scientific professions so that training gaps can be identified and overcome. More detailed examination of publications on D&I CBIs as well as the wider literature on capacity building would be of significant merit to the field.

Dataset Information

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

Publications

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

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