Engage for Equity: Development of Community-Based Participatory Research Tools.

We developed a set of four community-based participatory research (CBPR) partnership tools aimed at supporting community-academic research partnerships in strengthening their research processes, with the ultimate goal of improving research outcomes. The aim of this article is to describe the tools we developed to accomplish this goal: (1) the River of Life Exercise; (2) a Partnership Visioning Exercise; (3) a personalized Partnership Data Report of data from academic and community research partners; and (4) a Promising Practices Guide with aggregated survey data analyses on promising CBPR practices associated with CBPR and health outcomes from two national samples of CBPR projects that completed a series of two online surveys. Relying on Paulo Freire's philosophy of praxis, or the cycles of collective reflection and action, we developed a set of tools designed to support research teams in holding discussions aimed at strengthening research partnership capacity, aligning research partnership efforts to achieve grant aims, and recalling and operationalizing larger social justice goals. This article describes the theoretical framework and process for tool development and provides preliminary data from small teams representing 25 partnerships who attended face-to-face workshops and provided their perceptions of tool accessibility and intended future use.

Engage for Equity: A Long-Term Study of Community-Based Participatory Research and Community-Engaged Research Practices and Outcomes.

Community-based participatory research (CBPR) and community-engaged research have been established in the past 25 years as valued research approaches within health education, public health, and other health and social sciences for their effectiveness in reducing inequities. While early literature focused on partnering principles and processes, within the past decade, individual studies, as well as systematic reviews, have increasingly documented outcomes in community support and empowerment, sustained partnerships, healthier behaviors, policy changes, and health improvements. Despite enhanced focus on research and health outcomes, the science lags behind the practice. CBPR partnering pathways that result in outcomes remain little understood, with few studies documenting best practices. Since 2006, the University of New Mexico Center for Participatory Research with the University of Washington's Indigenous Wellness Research Institute and partners across the country has engaged in targeted investigations to fill this gap in the science. Our inquiry, spanning three stages of National Institutes of Health funding, has sought to identify which partnering practices, under which contexts and conditions, have capacity to contribute to health, research, and community outcomes. This article presents the research design of our current grant, Engage for Equity, including its history, social justice principles, theoretical bases, measures, intervention tools and resources, and preliminary findings about collective empowerment as our middle range theory of change. We end with lessons learned and recommendations for partnerships to engage in collective reflexive practice to strengthen internal power-sharing and capacity to reach health and social equity outcomes.

12-Month Cost Outcomes of Community Engagement Versus Technical Assistance for Depression Quality Improvement: A Partnered, Cluster Randomized, Comparative-Effectiveness Trial.

Objective: To compare community engagement and planning (CEP) for coalition support to implement depression quality improvement (QI) to resources for services (RS) effects on service-use costs over a 12-month period. Design: Matched health and community programs (N=93) were cluster-randomized within communities to CEP or RS. Setting: Two Los Angeles communities. Participants: Adults (N=1,013) with depressive symptoms (Patient Health Questionnaire (PHQ-8) ≥10); 85% African American and Latino. Interventions: CEP and RS to support programs in depression QI. Main Outcome Measures: Intervention training and service-use costs over 12 months. Results: CEP planning and training costs were almost 3 times higher than RS, largely due to greater CEP provider training participation vs RS, with no significant differences in 12-month service-use costs. Conclusions: Compared with RS, CEP had higher planning and training costs with similar service-use costs.

Comparative Effectiveness of Two Models of Depression Services Quality Improvement in Health and Community Sectors.

OBJECTIVE: The effectiveness of community coalition building and program technical assistance was compared in implementation of collaborative care for depression among health care and community sector clients. METHODS: In under-resourced communities, within 93 programs randomly assigned to coalition building (Community Engagement and Planning) or program technical assistance (Resources for Services) models, 1,018 clients completed surveys at baseline and at six, 12, or 36 months. Regression analysis was used to estimate intervention effects and intervention-by-sector interaction effects on depression, mental health-related quality of life, and community-prioritized outcomes and on services use. RESULTS: For outcomes, there were few significant intervention-by-sector interactions, and stratified findings suggested benefits of coalition building in both sectors. For services use, at 36 months, increases were found for coalition building in primary care visits, self-help visits, and appropriate treatment for community clients and in community-based services use for health care clients. CONCLUSIONS: Relative to program technical assistance, community coalition building benefited clients across sectors and shifted long-term utilization across sectors.

Cluster Analysis of Acute Care Use Yields Insights for Tailored Pediatric Asthma Interventions.

STUDY OBJECTIVE: We undertake this study to understand patterns of pediatric asthma-related acute care use to inform interventions aimed at reducing potentially avoidable hospitalizations. METHODS: Hospital claims data from 3 Camden city facilities for 2010 to 2014 were used to perform cluster analysis classifying patients aged 0 to 17 years according to their asthma-related hospital use. Clusters were based on 2 variables: asthma-related ED visits and hospitalizations. Demographics and a number of sociobehavioral and use characteristics were compared across clusters. RESULTS: Children who met the criteria (3,170) were included in the analysis. An examination of a scree plot showing the decline in within-cluster heterogeneity as the number of clusters increased confirmed that clusters of pediatric asthma patients according to hospital use exist in the data. Five clusters of patients with distinct asthma-related acute care use patterns were observed. Cluster 1 (62% of patients) showed the lowest rates of acute care use. These patients were least likely to have a mental health-related diagnosis, were less likely to have visited multiple facilities, and had no hospitalizations for asthma. Cluster 2 (19% of patients) had a low number of asthma ED visits and onetime hospitalization. Cluster 3 (11% of patients) had a high number of ED visits and low hospitalization rates, and the highest rates of multiple facility use. Cluster 4 (7% of patients) had moderate ED use for both asthma and other illnesses, and high rates of asthma hospitalizations; nearly one quarter received care at all facilities, and 1 in 10 had a mental health diagnosis. Cluster 5 (1% of patients) had extreme rates of acute care use. CONCLUSION: Differences observed between groups across multiple sociobehavioral factors suggest these clusters may represent children who differ along multiple dimensions, in addition to patterns of service use, with implications for tailored interventions.

A Community-Partnered, Participatory, Cluster-Randomized Study of Depression Care Quality Improvement: Three-Year Outcomes.

OBJECTIVE: Community Partners in Care, a community-partnered, cluster-randomized trial with depressed clients from 93 Los Angeles health and community programs, examined the added value of a community coalition approach (Community Engagement and Planning [CEP]) versus individual program technical assistance (Resources for Services [RS]) for implementing depression quality improvement in underserved communities. CEP was more effective than RS in improving mental health-related quality of life, reducing behavioral health hospitalizations, and shifting services toward community-based programs at six months. At 12 months, continued evidence of improvement was found. This study examined three-year outcomes. METHODS: Among 1,004 participants with depression who were eligible for three-year follow-up, 600 participants from 89 programs completed surveys. Multiple regression analyses estimated intervention effects on poor mental health-related quality of life and depression, physical health-related quality of life, behavioral health hospital nights, and use of services. RESULTS: At three years, no differences were found in the effects of CEP versus RS on depression or mental health-related quality of life, but CEP had modest effects in improving physical health-related quality of life and reducing behavioral health hospital nights, and CEP participants had more social- and community-sector depression visits and greater use of mood stabilizers. Sensitivity analyses with longitudinal modeling reproduced these findings but found no significant differences between groups in change from baseline to three years. CONCLUSIONS: At three years, CEP and RS did not have differential effects on primary mental health outcomes, but CEP participants had modest improvements in physical health and fewer behavioral health hospital nights.

12-month outcomes of community engagement versus technical assistance to implement depression collaborative care: a partnered, cluster, randomized, comparative effectiveness trial.

BACKGROUND: Depression collaborative care implementation using community engagement and planning (CEP) across programs improves 6-month client outcomes in minority communities, compared with technical assistance to individual programs (resources for services [RS]). However, 12-month outcomes are unknown. OBJECTIVE: To compare effects of CEP and RS on mental health-related quality of life (MHRQL) and use of services among depressed clients at 12 months. DESIGN: Matched health and community programs (n = 93) in 2 communities randomly assigned to receive CEP or RS. (ClinicalTrials.gov: NCT01699789). MEASUREMENTS: Self-reported MHRQL and services use at baseline, 6 months, and 12 months. SETTING: Los Angeles, California. PATIENTS: 1018 adults with depressive symptoms (8-item Patient Health Questionnaire score ≥10), 88% of whom were an ethnic minority. INTERVENTION: CEP and RS to implement depression collaborative care. MEASUREMENTS: The primary outcome was poor MHRQL (12-item mental health composite score ≤40) at baseline, 6 months, and 12 months; the secondary outcome was use of services at 12 months. RESULTS: At 6 months, the finding that CEP outperformed RS to reduce poor MHRQL was significant but sensitive to underlying statistical assumptions. At 12 months, some analyses suggested that CEP was advantageous to MHRQL, whereas others did not confirm a significant difference favoring CEP. The finding that CEP reduced behavioral health hospitalizations at 6 months was less evident at 12 months and was sensitive to underlying statistical assumptions. Other services use did not significantly differ between interventions at 12 months. LIMITATION: Data are self-reported, and findings are sensitive to modeling assumptions. CONCLUSION: In contrast to 6-month results, no consistent effects of CEP on reducing the likelihood of poor MHRQL and behavioral health hospitalizations were found at 12 months. Still, given the needs of underresourced communities, the favorable profile of CEP, and the lack of evidence-based alternatives, CEP remains a viable strategy for policymakers and communities to consider. PRIMARY FUNDING SOURCE: National Institute of Mental Health, Robert Wood Johnson Foundation, California Community Foundation, National Library of Medicine, and National Institutes of Health/National Center for Advancing Translational Science for the UCLA Clinical and Translational Science Institute.

Community-based partnered research: new directions in mental health services research.

OBJECTIVE: Community-based participatory research has the potential to improve implementation of best practices to reduce disparities but has seldom been applied in mental health services research. This article presents the content and lessons learned from a national conference designed to stimulate such an application. DESIGN: Mental health program developers collaborated in hosting a two-day conference that included plenary and break-out sessions, sharing approaches to community-academic partnership development, and preliminary findings from partnered research studies. Sessions were audiotaped, transcribed and analyzed by teams of academic and community conference participants to identify themes about best practices, challenges faced in partnered research, and recommendations for development of the field. Themes were illustrated with selections from project descriptions at the conference. SETTING AND PARTICIPANTS: Participants, representing 9 academic institutions and 12 community-based agencies from four US census regions, were academic and community partners from five research centers funded by the National Institute of Mental Health, and also included staff from federal and non-profit funding agencies. RESULTS: Five themes emerged: 1) Partnership Building; 2) Implementing and Supporting Partnered Research; 3) Developing Creative Dissemination Strategies; 4) Evaluating Impact; and 5) Training. CONCLUSIONS: Emerging knowledge of the factors in the partnership process can enhance uptake of new interventions in mental health services. Conference proceedings suggested that further development of this field may hold promise for improved approaches to address the mental health services quality chasm and service disparities.

The vision, valley, and victory of community engagement.

This chapter provides an overview of Community-Partnered Participatory Research (CPPR) and introduces the articles in this special issue. CPPR is a model to engage community and academic partners equally in an initiative to benefit the community while contributing to science. This article reviews the history of the partnership of community and academic institutions that developed under the leadership of Healthy African American Families. Central to the CPPR model is a framework of community engagement that includes and mobilizes the full range of community and academic stakeholders to work collaboratively. The three stages of CPPR (Vision, Valley and Victory) are reviewed, along with the organization and purpose of the guidebook presented as articles in this issue.

Develop a vision.

The Vision stage is the development of the agreed-upon framework for the study, including identifying the issue, the community, the stakeholders, and major aspects of the approach. Achieving the Vision requires planning through a Framing Committee, agreeing on a vision by sharing perspectives and identifying commonalities or "win-wins" that hold the partnership together for community benefit, and evaluating the emergence of the Vision and the partnership. Here, we review tools and strategies.

Work through the valley: plan.

This first of three chapters on the Valley stage, or main work of a Community-Partnered Participatory Research (CPPR) initiative, concerns the planning phase of the work cycle. The main goal of this phase is to develop an action plan, which clarifies the goals, methods, responsible individuals, and timeline for doing the work. Further, this chapter reviews approaches, such as creativity and use of humor, that help level the playing field and assure community co-leadership with academic partners in developing effective action plans.

Work through the valley: evaluate.

While all stages of a community-partnered participatory research (CPPR) initiative involve evaluation, the main focus is the evaluation of the action plans, which often involves the most rigorous evaluation activities of the project, from both a community-engagement and scientific perspective. This article reviews evaluation principles for a community-based project, and describes the goals and functions of the Council's research and evaluation committee. It outlines 10 steps to partnered evaluation, and concludes by emphasizing the importance of asset-based evaluation that builds capacity for the community and the partnership.

Differences in HIV care between patients with and without severe mental illness.

OBJECTIVE: This study explored how HIV care differs for infected persons with and without severe mental illness. METHODS: Data were obtained through interviews with and chart review of 295 patients with severe mental illness and HIV from public mental health agencies in Los Angeles County and New York City. Data were compared with data from 1,294 HIV patients without severe mental illness from a separate national probability sample. Measures were difficulty obtaining care, whether patients recommend their HIV care provider, hospital problem score, functional health status, and disability days. RESULTS: In Los Angeles, HIV patients with severe mental illness were more likely than those without severe mental illness to have difficulty obtaining care (p<.001); to not recommend their provider (10% versus 5%, p=.007); and to have problematic hospital care (p=.001), poor health status (p=.001), and more disability days (p<.001). In New York City, HIV patients with severe mental illness were more likely than patients without severe mental illness to have difficulty obtaining care (p=.002) and not recommend their provider (p=.02). The relationship between severe mental illness and health status in Los Angeles and access in New York City became insignificant after adjustment for sociodemographic factors, drug use, and CD4 cell count. Further adjustment for higher case management rates among HIV patients with severe mental illness reduced disparities only in the West. CONCLUSIONS: Patients with severe mental illness experienced more problems with HIV care than patients without severe mental illness, although high case management rates for patients with severe mental illness may have offset some problems.

Co-location of health care for adults with serious mental illness and HIV infection.

This study describes persons with serious mental illness and comorbid HIV infection and examines the effect of co-location of mental health and HIV care on satisfaction, service utilization, and appropriateness of care. One hundred and eighteen subjects completed interviews and gave blood samples; medical records were abstracted. Most reported few barriers to care and satisfaction with mental health and HIV treatment. Co-location of mental health and HIV care did not influence satisfaction with care, utilization of services, or appropriateness of care. This report challenges the notion that persons with serious mental illnesses receive inadequate health care and that they have minimal capacity for illness management. These subjects may be benefiting from increased funding for, and attention to, persons with HIV infection.

A framework to improve the quality of treatment for depression in primary care.

New forms of medication and brief psychotherapy have dramatically changed how depressive disorders have been treated over the past two decades. In spite of these changes, the quality of treatment for depression remains poor at the population level. In this article, the authors review current concepts and theory regarding the quality of treatment for depression. They present a conceptual model of four points in the course of a treatment episode when clinicians could deviate from guidelines. Using the model, the authors review research that supports guideline recommendations and that can inform clinicians' decisions. They suggest several areas for future study and action, including extending awareness and recognition outside the medical care setting to schools and workplaces, addressing growing concerns about possible overtreatment, using qualitative research approaches to gain an understanding of patient perspectives on treatment, and improving the measurement for quality of treatment.

Building an academic-community partnered network for clinical services research: the Community Health Improvement Collaborative (CHIC).

OBJECTIVE: Community-based participatory research is recommended for research on health disparities and to improve uptake of clinical research findings. We describe the development of a multicenter consortium designed to support a community agency-academic partner infrastructure to support community-based, health-services research on multiple sources of health and healthcare disparities in local communities. DESIGN: We describe the development of the Los Angeles Community Health Improvement Collaborative (CHIC). RESULTS: The CHIC partners examined the research capacity and health priorities of its partners and developed a research agenda focused on four tracer conditions (depression, violence, diabetes, and obesity) and four areas for development of research capacity: public participation in all phases of research; understanding community and organizational context for clinical services interventions; practical clinical services trial methods; and advancing health information technology for clinical services research. The partners pooled resources to develop these areas for the tracer conditions. CONCLUSIONS: The challenges of a participatory approach to community-based clinical services research go beyond the significant methodologic and operational issues for specific projects and include building a sustainable capacity for research, community programs, and partnership across diverse communities and stakeholder organizations even when funding sources are not fully aligned with these goals.

Witness for Wellness: preliminary findings from a community-academic participatory research mental health initiative.

Quality improvement programs promoting depression screening and appropriate treatment can significantly reduce racial and ethnic disparities in mental-health care and outcomes. However, promoting the adoption of quality-improvement strategies requires more than the simple knowledge of their potential benefits. To better understand depression issues in racial and ethnic minority communities and to discover, refine, and promote the adoption of evidence-based interventions in these communities, a collaborative academic-community participatory partnership was developed and introduced through a community-based depression conference. This partnership was based on the community-influenced model used by Healthy African-American Families, a community-based agency in south Los Angeles, and the Partners in Care model developed at the UCLA/RAND NIMH Health Services Research Center. The integrated model is described in this paper as well as the activities and preliminary results based on multimethod program evaluation techniques. We found that combining the two models was feasible. Significant improvements in depression identification, knowledge about treatment options, and availability of treatment providers were observed among conference participants. In addition, the conference reinforced in the participants the importance of community mobilization for addressing depression and mental health issues in the community. Although the project is relatively new and ongoing, already substantial gains in community activities in the area of depression have been observed. In addition, new applications of this integrated model are underway in the areas of diabetes and substance abuse. Continued monitoring of this project should help refine the model as well as assist in the identification of process and outcome measures for such efforts.

Innovative approaches to obtaining community feedback in the Witness for Wellness experience.

BACKGROUND: Awareness of the need for innovative approaches to obtaining feedback in community-based participatory research (CBPR) is increasing. These innovative approaches should incorporate the core principles of CBPR, including equity and co-learning. Additionally, the methods should be culturally appropriate and inclusive of the community and academic partners. OBJECTIVE: To develop and implement two separate methods of obtaining community feedback for two activities in a CBPR initiative: 1) discussion of three work-group plans during a leadership council meeting; and 2) feedback from the work groups to the target community in a public setting. METHODS: In order to facilitate a feedback process for the discussion of 3 separate group action plans, an adapted version of the modified Delphi technique was used during which 42 community and academic partners voted and evaluated each plan both before and after group discussion. Results were immediately posted on a projection screen for the group to process. The second community feedback method incorporated the use of an audience response system (ARS) in order to obtain responses from 187 community participants after hearing summaries of the Witness for Wellness work-group action plans. More than 60% of the respondents added that the use of the handheld device made research seem more relevant and less intimidating. CONCLUSIONS: Both the use of the adapted modified Delphi process and ARS were effective in capturing community feedback related to two group activities in the Witness for Wellness initiative. Both methods also allowed participants to understand the role of research in a community setting.

Talking Wellness: a description of a community-academic partnered project to engage an African-American community around depression through the use of poetry, film, and photography.

The design, implementation, and preliminary evaluation of an enhanced community-engagement program that uses poetry, film, and photography at a film festival in south Los Angeles is described. This project is one of several Talking Wellness projects designed to develop social capital and enhance community engagement in projects designed to improve the community's capacity to communicate effectively about depression, to decrease the associated stigma, and to participate in the design and evaluation of research interventions. The high degree of collaboration in the development and evaluation of this community participatory research model is illustrated by describing the selection and design of the intervention and the development of the survey questionnaires used for data collection. The project is described from the perspective of community members involved in the process.

Patterns of HIV care for patients with serious mental illness.

Individuals with serious mental illness are at higher risk for HIV than are members of the general population. Although studies have shown that individuals with serious mental illness experience less adequate care and worse physical health outcomes than comparable patients without serious mental illness, little is known about HIV care among individuals with serious mental illness who become infected with HIV. In the present study, we describe patterns of highly active antiretroviral treatment (HAART) use and physician monitoring received by 154 patients with serious mental illness infected with HIV. Participants were recruited from mental health agencies in Los Angeles, California. Data from 762 HIV-only patients from a separate Western U.S. probability sample were used for comparison. High proportions of serious mental illness patients with HIV in our sample appeared to be receiving adequate HIV care. Fifty-one percent of all serious mental illness patients with serious mental illness with HIV were taking HAART, and the majority received close monitoring of their CD4 counts (84%) and viral loads (82%) throughout a 1-year period. HAART use and patterns of CD4 count and viral load monitoring did not differ significantly between patients with both serious mental illness and HIV, and patients with HIV only (all p > 0.05). Specialized programs providing assistance to serious mental illness populations with HIV may be helping to narrow health care disparities as a result of having serious mental illness.