Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities.

OBJECTIVE: Clinical trials for systemic lupus erythematosus ("lupus") under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community-academic partnerships in 2 US cities (Boston and Chicago) to train popular opinion leaders (POLs) to disseminate information about clinical trials in predominantly Black communities. METHODS: The team of community and academic partners collaboratively developed a 5-module curriculum about clinical trials, barriers, facilitators, and structural racism in research. We enrolled POLs in Boston and Chicago to participate virtually in the curriculum and assessed knowledge gained by comparing pre- and post-test scores. We described the POLs' ability to disseminate information about clinical trials through their communities. RESULTS: We enrolled 19 POLs in Boston and 16 in Chicago; overall, 71% reported a lupus diagnosis, 94% were female, and 80% self-identified as Black or African American. The program was adapted to virtual formats due to the COVID-19 pandemic. POLs demonstrated significant improvement comparing pre/post scores for the conduct of clinical trials and history of racism in clinical research. Fifteen POLs (43%) reported their dissemination of information about clinical trials. Information reached 425 community members in Boston (90% virtually) and 1,887 in Chicago (95% virtually). CONCLUSION: By leveraging community-academic partnerships, we developed and implemented a curriculum to promote familiarity with clinical trials, leading to information dissemination by POLs in predominantly Black communities that are underrepresented in lupus clinical trials. The program successfully transitioned to a virtual model during the COVID-19 pandemic.

Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research.

BACKGROUND: Participating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disproportionate burden of cancer mortality compared to Whites. Patient-engaged research is one potential strategy to address racial inequities in clinical trials, but little is known about best practices for engaging Black individuals and communities impacted by cancer in research partnerships. METHODS: We used a community engaged research approach to establish a patient advisory council (PAC) representative of the patient population served by a safety net hospital cancer center. We outline the process of establishing the PAC and the lessons learned. RESULTS: The inaugural PAC included 7 members representative of the cancer center's patient demographics. PAC members developed a patient centered vision, mission and action plan. PAC and community-academic research partners experienced the transformative power of centering the lived experiences of patients of color to promote health equity in cancer research. CONCLUSION: Establishing a patient advisory council at a safety net hospital cancer care center provided a platform for engaging a hardly reached population in patient centered research.

Participating in clinical trials is an important measure of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to participate in clinical trials and are more likely to die from cancer compared to Whites. Including Black patients as research partners is one way to improve racial equity in clinical trial participation. We established a patient advisory council (PAC) including patients and caregivers with similar racial demographics as the patients receiving care at a safety net hospital cancer center. PAC members partnered with the research team to develop a vision, mission, and action plan to improve research participation among patients of color. PAC members used their lived experiences and training from the research team to help develop a strategy to improve representation of patients of color in cancer research. This paper is focused on the PAC development process.

Community-Engaged Research: Leveraging Community-Academic Partnerships to Reduce Disparities and Inequities in Lupus Care.

Community-engaged research is an effective tool to address health care disparities and inequities in lupus care. Community-based participatory research allows the highest degree of community engagement, but may be limited by the challenges associated with long-term funding and implementation. Community-academic partnerships are a feasible way to allow for varying degrees of community engagement and develop sustainable infrastructure. Two examples of community-engaged research in rheumatology are MONARCAS and Lupus Conversations.

Changing The Face Of Health Care Delivery: The Importance Of Youth Participation.

Young people are often the intended audience for health and social programs, yet they rarely participate in the decision-making processes that determine how these programs are designed, implemented, or evaluated. Failing to meaningfully engage young people, well-intended adults may miss opportunities to create relevant and effective programs and policies for youth. This article describes a youth-led health assessment conducted with researchers from an academic medical center accountable care organization and stakeholders from a local community center. We explain the process of recruiting and engaging youth in this project, along with health concerns they identified in their communities via a survey, including mental and sexual health, food access, and community safety, as well as recommendations the youth researchers developed for improving health and tackling inequities. Our findings show that youth participation fosters a deeper sense of empowerment and leadership potential. Policy makers and other health leaders should consider engaging young people as they make decisions about health care delivery.

A Structural Model of Social Determinants of the Metabolic Syndrome.

Objectives: The metabolic syndrome (MetS) refers to a cluster of interrelated physiological characteristics that are associated with an increased risk of cardiovascular disease and diabetes. While the clinical usefulness of the MetS has been the subject of controversy for years, increasingly sophisticated methods are being used to measure the concept. Participants: Study of community health center patients who were not diabetic; study group was evenly divided between Black and White adults. Main Outcome Measures: Latent MetS score and MetS status based on the five-point scale developed by the National Cholesterol Education Panel (NCEP). Methods: Structural equation modeling of MetS incorporating the effects of race/ethnicity, racial discrimination, socioeconomic position (SEP), and selected mediating variables. Results: The largest influences on latent MetS scores were SEP (negative relationship) and male gender (higher scores for men). Two mediating variables, physical activity and stress-related eating, had smaller impacts. Self-reported racial discrimination was associated with cynical hostility but did not influence the MetS level among nondiabetics. Despite higher NCEP scores and MetS prevalence rates for Blacks compared with Whites, race did not have direct effect on MetS levels when adjusted for the other characteristics in our model. Conclusions: Neither race nor self-reported racial discrimination had direct effects on MetS level in our structural model. The large effects of socioeconomic position and male gender were not mediated by the other variables in the model.

Assessing cancer center researcher and provider perspectives on patient engagement.

Participatory research approaches can help ensure research is culturally relevant and aligned with stakeholder priorities, but barriers exist between researchers and community stakeholders, particularly in communities of color. We developed a measurement tool for assessing oncology researcher and provider readiness to undertake patient-engaged research, and piloted this measurement tool among oncology researchers and providers at the hospital's cancer care center. A survey was developed by drawing from existing PCORI assessments as well as creating original questions, in an effort to develop an evidence-based survey tailored to this project. A total of 23 researchers and providers responded to the survey. The majority of respondents indicated that they were moderately or very familiar with the concept of patient-centered outcomes research. Most respondents had little to no experience engaging in participatory research and endorsed several barriers to engaging patients in the research process, including lack of experience and time. A mechanism for preparing and supporting researchers and providers is needed if cancer centers are to implement patient-powered research agendas as recommended by PCORI.

Effectiveness of the DECIDE Interventions on Shared Decision Making and Perceived Quality of Care in Behavioral Health With Multicultural Patients: A Randomized Clinical Trial.

Importance: Few randomized clinical trials have been conducted with ethnic/racial minorities to improve shared decision making (SDM) and quality of care. Objective: To test the effectiveness of patient and clinician interventions to improve SDM and quality of care among an ethnically/racially diverse sample. Design, Setting, and Participants: This cross-level 2 × 2 randomized clinical trial included clinicians at level 2 and patients (nested within clinicians) at level 1 from 13 Massachusetts behavioral health clinics. Clinicians and patients were randomly selected at each site in a 1:1 ratio for each 2-person block. Clinicians were recruited starting September 1, 2013; patients, starting November 3, 2013. Final data were collected on September 30, 2016. Data were analyzed based on intention to treat. Interventions: The clinician intervention consisted of a workshop and as many as 6 coaching telephone calls to promote communication and therapeutic alliance to improve SDM. The 3-session patient intervention sought to improve SDM and quality of care. Main Outcomes and Measures: The SDM was assessed by a blinded coder based on clinical recordings, patient perception of SDM and quality of care, and clinician perception of SDM. Results: Of 312 randomized patients, 212 (67.9%) were female and 100 (32.1%) were male; mean (SD) age was 44.0 (15.0) years. Of 74 randomized clinicians, 56 (75.7%) were female and 18 (4.3%) were male; mean (SD) age was 39.8 (12.5) years. Patient-clinician pairs were assigned to 1 of the following 4 design arms: patient and clinician in the control condition (n = 72), patient in intervention and clinician in the control condition (n = 68), patient in the control condition and clinician in intervention (n = 83), or patient and clinician in intervention (n = 89). All pairs underwent analysis. The clinician intervention significantly increased SDM as rated by blinded coders using the 12-item Observing Patient Involvement in Shared Decision Making instrument (b = 4.52; SE = 2.17; P = .04; Cohen d = 0.29) but not as assessed by clinician or patient. More clinician coaching sessions (dosage) were significantly associated with increased SDM as rated by blinded coders (b = 12.01; SE = 3.72; P = .001; Cohen d = 0.78). The patient intervention significantly increased patient-perceived quality of care (b = 2.27; SE = 1.16; P = .05; Cohen d = 0.19). There was a significant interaction between patient and clinician dosage (b = 7.40; SE = 3.56; P = .04; Cohen d = 0.62), with the greatest benefit when both obtained the recommended dosage. Conclusions and Relevance: The clinician intervention could improve SDM with minority populations, and the patient intervention could augment patient-reported quality of care. Trial Registration: clinicaltrials.gov Identifier: NCT01947283.

Community engagement in patient-centered outcomes research: Benefits, barriers, and measurement.

INTRODUCTION: This study employed the Delphi method, an exploratory method used for group consensus building, to determine the benefits and challenges associated with community engagement in patient-centered outcomes research. METHODS: A series of email surveys were sent to the Patient-Centered Outcomes Research Institute (PCORI)-funded researchers (n = 103) in New England. Consensus was achieved through gathering themes and engaging participants in ranking their level of agreement over three rounds. In round one, participant responses were coded thematically and then tallied. In round two participants were asked to state their level of agreement with each of the themes using a Likert scale. Finally, in round three, the group was asked to rank the round two themes based on potential impact. RESULTS: Results suggested the greatest benefit of community engagement is that it brings multiple perspectives to the table, with 92% ranking it as the first or second most important contribution. Time was ranked as the most significant barrier to engaging community. Strategies to overcome barriers to community engagement include engaging key stakeholders early in the research, being kind and respectful and spending time with stakeholders. The most significant finding was that no researchers reported having specific measures to evaluate community engagement. CONCLUSION: Community engagement can enhance both research relevance and methodology when researchers are engaged in meaningful collaborations. Advancing the science of community engagement will require the development of evaluation metrics to examine the multiple domains of partnership.

Perceptions of Cancer Care and Clinical Trials in the Black Community: Implications for Care Coordination Between Oncology and Primary Care Teams.

BACKGROUND: Despite efforts to ameliorate disparities in cancer care and clinical trials, barriers persist. As part of a multiphase community-engaged assessment, an exploratory community-engaged research partnership, forged between an academic hospital and a community-based organization, set out to explore perceptions of cancer care and cancer clinical trials by black Bostonians. MATERIALS AND METHODS: Key informant interviews with health care providers and patient advocates in community health centers (CHCs), organizers from grassroots coalitions focused on cancer, informed the development of a focus group protocol. Six focus groups were conducted with black residents in Boston, including groups of cancer survivors and family members. Transcripts were coded thematically and a code-based report was generated and analyzed by community and academic stakeholders. RESULTS: While some participants identified clinical trials as beneficial, overall perceptions conjured feelings of fear and exploitation. Participants describe barriers to clinical trial participation in the context of cancer care experiences, which included negative interactions with providers and mistrust. Primary care physicians (PCPs) reported being levied as a trusted resource for patients undergoing care, but lamented the absence of a mechanism by which to gain information about cancer care and clinical trials. CONCLUSIONS: Confusion about cancer care and clinical trials persists, even among individuals who have undergone treatment for cancer. Greater coordination between PCPs and CHC care teams and oncology care teams may improve patient experiences with cancer care, while also serving as a mechanism to disseminate information about treatment options and clinical trials. IMPLICATIONS FOR PRACTICE: Inequities in cancer care and clinical trial participation persist. The findings of this study indicate that greater coordination with primary care physicians (PCPs) and community health center (CHC) providers may be an important step for both improving the quality of cancer care in communities and increasing awareness of clinical trials. However, PCPs and CHCs are often stretched to capacity with caring for their communities. This leaves the oncology community well positioned to create programs to bridge the communication gaps and provide resources necessary to support oncologic care along the cancer continuum, from prevention through survivorship.

Addressing social determinants of health at well child care visits: a cluster RCT.

OBJECTIVE: To evaluate the effect of a clinic-based screening and referral system (Well Child Care, Evaluation, Community Resources, Advocacy, Referral, Education [WE CARE]) on families' receipt of community-based resources for unmet basic needs. METHODS: We conducted a cluster randomized controlled trial at 8 urban community health centers, recruiting mothers of healthy infants. In the 4 WE CARE clinics, mothers completed a self-report screening instrument that assessed needs for child care, education, employment, food security, household heat, and housing. Providers made referrals for families; staff provided requisite applications and telephoned referred mothers within 1 month. Families at the 4 control community health centers received the usual care. We analyzed the results with generalized mixed-effect models. RESULTS: Three hundred thirty-six mothers were enrolled in the study (168 per arm). The majority of families had household incomes <$20,000 (57%), and 68% had ≥ 2 unmet basic needs. More WE CARE mothers received ≥ 1 referral at the index visit (70% vs 8%; adjusted odds ratio [aOR] = 29.6; 95% confidence interval [CI], 14.7-59.6). At the 12-month visit, more WE CARE mothers had enrolled in a new community resource (39% vs 24%; aOR = 2.1; 95% CI, 1.2-3.7). WE CARE mothers had greater odds of being employed (aOR = 44.4; 95% CI, 9.8-201.4). WE CARE children had greater odds of being in child care (aOR = 6.3; 95% CI, 1.5-26.0). WE CARE families had greater odds of receiving fuel assistance (aOR = 11.9; 95% CI, 1.7-82.9) and lower odds of being in a homeless shelter (aOR = 0.2; 95% CI, 0.1-0.9). CONCLUSIONS: Systematically screening and referring for social determinants during well child care can lead to the receipt of more community resources for families.

Community engagement in the CTSA program: stakeholder responses from a national Delphi process.

In response to the Institute of Medicine (IOM) Committee's December 2012 public request for stakeholder input on the Clinical and Translational Science Award (CTSA) program, two nonprofit organizations, the Center for Community Health Education Research and Service, Inc. (CCHERS) and Community-Campus Partnerships for Health (CCPH), solicited feedback from CTSA stakeholders using the Delphi method. Academic and community stakeholders were invited to participate in the Delphi, which is an exploratory method used for group consensus building. Six questions posed by the IOM Committee to an invited panel on community engagement were electronically sent to stakeholders. In Round 1 stakeholder responses were coded thematically and then tallied. Round 2 asked stakeholders to state their level of agreement with each of the themes using a Likert scale. Finally, in Round 3 the group was asked to rank the Round 2 based on potential impact for the CTSA program and implementation feasibility. The benefits of community engagement in clinical and translational research as well as the need to integrate community engagement across all components of the CTSA program were common themes. Respondents expressed skepticism as to the feasibility of strengthening CTSA community engagement.

Pilot evaluation of the Making Employment Needs [MEN] count intervention: addressing behavioral and structural HIV risks in heterosexual black men.

Few community-based HIV interventions exist for Black men at heterosexual risk for HIV. None focus on structural HIV risks such as unemployment and unstable housing. This study involved a pilot evaluation of the MEN (Making Employment Needs) Count HIV intervention, a three session peer counselor-delivered program of HIV risk reduction and gender-equity counseling, and employment and housing case management. A single-arm intervention trial of MEN Count was conducted with Black men recruited from a community men's clinic and social services program. Eligible men were those who reported two or more sex partners in the past six months and current unemployment and/or recent homelessness. Most participants (68%) had a history of incarceration. Participants (N = 50) were surveyed on outcomes at baseline (Time 1), posttest (Time 2; 60-90 days after baseline), and two-month follow-up (Time 3). The majority of participants were retained in the program (86%) and the final follow-up survey (76%). McNemar tests revealed significant reductions in the past 30-day unprotected sex from Time 1 (74%) to Time 2 (47%) and to Time 3 (47%), and in homelessness from Time 1 (58%) to Time 3 (32%). Significant increases in employment from Time 1 (8%) to Time 2 (29%) and Time 3 (32%) were also seen. Participants completed a brief participant satisfaction survey at posttest. Most (n=28, 65%) rated the program as excellent, and an additional 10 (23%) rated it as good. Although there was no significant reduction in multiple sex partners, a trend was observed from Time 1 (56%) to Time 2 (44%) and Time 3 (42%). Findings suggest that the MEN Count model is a feasible and promising HIV prevention program for Black men at heterosexual risk for HIV. Larger scale implementation and more rigorous evaluation of MEN Count are needed to confirm the study findings.

Racial discrimination & cardiovascular disease risk: my body my story study of 1005 US-born black and white community health center participants (US).

OBJECTIVES: To date, limited and inconsistent evidence exists regarding racial discrimination and risk of cardiovascular disease (CVD). METHODS: Cross-sectional observational study of 1005 US-born non-Hispanic black (n = 504) and white (n = 501) participants age 35-64 randomly selected from community health centers in Boston, MA (2008-2010; 82.4% response rate), using 3 racial discrimination measures: explicit self-report; implicit association test (IAT, a time reaction test for self and group as target vs. perpetrator of discrimination); and structural (Jim Crow status of state of birth, i.e. legal racial discrimination prior 1964). RESULTS: Black and white participants both had adverse cardiovascular and socioeconomic profiles, with black participants most highly exposed to racial discrimination. Positive crude associations among black participants occurred for Jim Crow birthplace and hypertension (odds ratio (OR) 1.92, 95% confidence interval (CI) 1.28, 2.89) and for explicit self-report and the Framingham 10 year CVD risk score (beta = 0.04; 95% CI 0.01, 0.07); among white participants, only negative crude associations existed (for IAT for self, for lower systolic blood pressure (SBP; beta = -4.86; 95% CI -9.08, -0.64) and lower Framingham CVD score (beta = -0.36, 95% CI -0.63, -0.08)). All of these associations were attenuated and all but the white IAT-Framingham risk score association were rendered null in analyses that controlled for lifetime socioeconomic position and additional covariates. Controlling for racial discrimination, socioeconomic position, and other covariates did not attenuate the crude black excess risk for SBP and hypertension and left unaffected the null excess risk for the Framingham CVD score. CONCLUSION: Despite worse exposures among the black participants, racial discrimination and socioeconomic position were not associated, in multivariable analyses, with risk of CVD. We interpret results in relation to constrained variability of exposures and outcomes and discuss implications for valid research on social determinants of health.

Assessing the need for improved access to rheumatology care: a survey of Massachusetts community health center medical directors.

OBJECTIVE: Access to rheumatology care can expedite diagnosis and treatment of rheumatic diseases and reduce disparities. We surveyed community health center (CHC) medical directors to evaluate rheumatology care in underserved areas and potential strategies for improvement. METHODS: We identified 77 Massachusetts CHCs that provide adult medical services and sent a 40-item survey to their physician medical directors. Survey questions assessed the centers' prevalence of rheumatic diseases, prescribing practices of immunosuppressive medications, and possible interventions to improve care. We compared CHC characteristics and rheumatology-specific items and then stratified our data by the response to whether improved access to rheumatology care was needed. Qualitative data were analyzed thematically. RESULTS: Thirty-six CHC physician medical directors returned surveys (47% response rate). Fifty-five percent indicated a need for better access to rheumatology care. Eighty-six percent of CHC physicians would not start a patient with rheumatoid arthritis on a disease-modifying antirheumatic drug; 94% would not start a patient with systemic lupus erythematosus on an immunosuppressant. When we compared CHCs that reported needing better access to rheumatology care to those that did not, the former described a significantly greater percentage of patients with private insurance or Medicaid who required outside rheumatology referrals (P < 0.05). Language differences and insurance status were highlighted as barriers to obtaining rheumatology care. Sixteen directors (57%) ranked the patient navigator-a layperson to assist with care coordination-as their first-choice intervention. CONCLUSIONS: Community health center medical directors expressed a need for better access to rheumatology services. A patient navigator for rheumatic diseases was proposed to help improve care and reduce health disparities.

Exposing racial discrimination: implicit & explicit measures--the My Body, My Story study of 1005 US-born black & white community health center members.

BACKGROUND: To date, research on racial discrimination and health typically has employed explicit self-report measures, despite their potentially being affected by what people are able and willing to say. We accordingly employed an Implicit Association Test (IAT) for racial discrimination, first developed and used in two recent published studies, and measured associations of the explicit and implicit discrimination measures with each other, socioeconomic and psychosocial variables, and smoking. METHODOLOGY/PRINCIPAL FINDINGS: Among the 504 black and 501 white US-born participants, age 35-64, randomly recruited in 2008-2010 from 4 community health centers in Boston, MA, black participants were over 1.5 times more likely (p<0.05) to be worse off economically (e.g., for poverty and low education) and have higher social desirability scores (43.8 vs. 28.2); their explicit discrimination exposure was also 2.5 to 3.7 times higher (p<0.05) depending on the measure used, with over 60% reporting exposure in 3 or more domains and within the last year. Higher IAT scores for target vs. perpetrator of discrimination occurred for the black versus white participants: for "black person vs. white person": 0.26 vs. 0.13; and for "me vs. them": 0.24 vs. 0.19. In both groups, only low non-significant correlations existed between the implicit and explicit discrimination measures; social desirability was significantly associated with the explicit but not implicit measures. Although neither the explicit nor implicit discrimination measures were associated with odds of being a current smoker, the excess risk for black participants (controlling for age and gender) rose in models that also controlled for the racial discrimination and psychosocial variables; additional control for socioeconomic position sharply reduced and rendered the association null. CONCLUSIONS: Implicit and explicit measures of racial discrimination are not equivalent and both warrant use in research on racial discrimination and health, along with data on socioeconomic position and social desirability.

Challenges of conducting community-based participatory research in Boston's neighborhoods to reduce disparities in asthma.

Boston is one of the preeminent health care and research centers in the world, but for much of its urban core, these resources are largely out of reach. Community Based Participatory Research (CBPR) provides a model with the potential to bridge the gaps between its research prominence and the health of its residents. We report here two case studies of major research projects that were partnerships between universities in Boston and community based organizations and city agencies. The Healthy Public Housing Initiative (HPHI) and the Asthma Center on Community Environment and Social Stress (ACCESS) are projects that provide numerous lessons about the potential and challenges of conducting CBPR. Ensuring that the projects were true partnerships emerged as key issues in both, especially with respect to funding mechanisms and distribution of resources, although the nature of the challenges differed substantially in the two projects. We note that both academic and community partners may harbor stereotypes about the other and that generalizations about broad populations, academics or community members, may not apply well to everyone. Aligning objectives and expectations emerged as another key lesson. In HPHI, tension between service delivery and research was both a source of conflict and a source of creative development that led to divergent but interesting outcomes. In ACCESS, the tensions revolved more around community capacity building while attempting to build and maintain a large cohort for epidemiological investigations. We conclude that open and frank discussion and a transparent process upfront about project direction, finances, expectations, and other dimensions are necessary but not sufficient to address the inherent challenges in CBPR, and that even so, there are likely to be differences in perspective in such partnerships that require honest negotiation throughout the process of the project.