Loretta Jones

Collaborative depression care: history, evolution and ways to enhance dissemination and sustainability

OBJECTIVE To describe the history and evolution of the collaborative depression care model and new research aimed at enhancing dissemination. METHOD Four keynote speakers from the 2009 NIMH Annual Mental Health Services Meeting collaborated in this article in order to describe the history and evolution of collaborative depression care, adaptation of collaborative care to new populations and medical settings, and optimal ways to enhance dissemination of this model. RESULTS Extensive evidence across 37 randomized trials has shown the effectiveness of collaborative care vs. usual primary care in enhancing quality of depression care and in improving depressive outcomes for up to 2 to 5 years. Collaborative care is currently being disseminated in large health care organizations such as the Veterans Administration and Kaiser Permanente, as well as in fee-for-services systems and federally funded clinic systems of care in multiple states. New adaptations of collaborative care are being tested in pediatric and ob-gyn populations as well as in populations of patients with multiple comorbid medical illnesses. New NIMH-funded research is also testing community-based participatory research approaches to collaborative care to attempt to decrease disparities of care in underserved minority populations. CONCLUSION Collaborative depression care has extensive research supporting the effectiveness of this model. New research and demonstration projects have focused on adapting this model to new populations and medical settings and on studying ways to optimally disseminate this approach to care, including developing financial models to incentivize dissemination and partnerships with community populations to enhance sustainability and to decrease disparities in quality of mental health care.

“Research” in Community-Partnered, Participatory Research

In many underserved communities, research is a loaded word that sets expectations of being examined or exploited.1, 2 This is more likely when data are published but not otherwise shared, such as in a community forum. Research, whether intended or not, may disadvantage groups through highlighting problems and not assets. Research can thus become a symbol of distance between community reality and the “ivory tower,” where few mechanisms exist to facilitate community access to knowledge. Academics may view pursuit of knowledge as paramount and in entering research partnerships take such perspectives personally rather than as an expected subject of ongoing discussion.3 The fact that research is a “loaded” word suggests that it is associated with a power that is important to understand. When members of underserved communities are reminded of everyday uses of research such as seat belts, the sense of alienation the term conveys can disappear. Vulnerable communities can place a high value on processes that advance knowledge, provided there is trust in the people and institutions.3 In community partnered participatory research (CPPR), partners are valued equally and collaborate jointly in research development, implementation, and dissemination.3 Those involved learn to appreciate that knowledge comes in many forms, including data, experience, history, and perception. An authentic partnership must use all means of discovery at its disposal to make progress in understanding how to benefit the community and advance science. To do this, it is important to maintain respectful engagement across diverse ways of viewing and gaining knowledge, and to anticipate and embrace the struggles and conflicts inherent in balancing perspectives. The word research when used in this context affords an opportunity to build trust. Webster’s Dictionary defines “research” as: “1. careful or diligent search; 2. studious inquiry or examination, esp: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws; 3; the collecting of information about a particular subject.” 3, 4 Regarding the 3rd definition, in CPPR it is important to consider how the research issue is chosen and whether it is a matter of community importance; to have transparency about how information is collected and by and for whom; and to assure that the work develops community and academic capacity to utilize the research products. Underserved communities particularly value approaches that prevent problems or foster hope.3, 5 The first definition above emphasizes care and diligence. Although scientists who are unfamiliar with partnered research may believe that it is not rigorous, such research is based on the expectation that all involved embrace diligence. No one wants sloppy research to inform medical care. The goal is to conduct research that all partners respect as diligent from their own perspective, which can involve compromise and new solutions.6 In the second definition, the word “studious” can suggest either diligence or classroom exercises of little relevance. In CPPR, community and academic participants are valued equally even if roles differ. Academic investigators become part of the community and community members co-direct the research, shifting its purpose and process. Limitations of academic experience in the community are balanced by community “PhDs of the sidewalk.” The words “investigation and experimentation” in the second definition can sound neutral or suggest being manipulated. In CPPR, the process is one of mutual engagement in a serious effort to improve community outcomes and advance knowledge, in which the full range of methods should be available. Partnered choices of rigorous designs are achieved through two-way discussions of what various designs offer and how communities engage. Design features such as respect for treatment preferences or wait lists for resources can improve the fit of experimental design and community context, while enhancing the feasibility and meaning of the research. Research of this type is “with” community and academic participants rather than “for” community by academic leaders.7 For complex projects using experimental designs, successful implementation requires efforts to support knowledge of methods in some depth maintained by community sources.7 Achieving this resource over multiple projects requires a community-owned infrastructure. For instance, a community center of excellence for health research emerged in Los Angeles under the leadership of Healthy African American Families and several academic and funding partners.8 Such a center could facilitate community contributions to and uses of research through libraries, trainings and community engagement events, supported by a community internal review board. Achieving community ownership is challenging under funding priorities that reinforce universities for research infrastructure. There are outstanding examples of sustained partnerships supported by grants and other resources.8, 9 Lack of independent funding means that community infrastructure relies on grants managed by academic partners, which is not ideal for true co-ownership. The second definition of research references diverse perspectives on laws and theories, in terms of which are universal and adequately tested, by whom, and for what purpose. Laws and theories once thought to be universal have been proven to be limited, as the theory of relativity redefined classical mechanics. Laws and theories are subject to cultural perspectives, including the views of those generating the research and setting the science agenda—a leadership group that has not consistently represented vulnerable populations. Some culturally-based theories of importance in underserved groups are not fully accepted as science because they have not been formally evaluated or studied only through alternative approaches, such as embracing cultural history or norms.10 In their work, academic investigators may act as though their way of knowing is more valid than such alternatives, but in their personal lives may not be so sure. This tension plays out with a different balance in underserved communities, toward personal and collective experience, leading to diverse expectations across groups. If academic and community partners share perspectives as trust is gained, common ground can emerge for concepts and theory that guide research.6 In CPPR, researchers seek humility concerning truth and attempts to understand the history and meaning of facts and theories. It is important to remain open to diverse perspectives, even when focusing on design and methods. Efforts to maintain that openness are part of the rigor of partnered research. This stance of humility pertains to interpretation, referenced in the second definition. Given different perspectives on truth, and the difficulty of arriving at shared perspectives given real differences in power and access to knowledge, those involved in partnered research value partnered interpretation. What do the data mean and to whom? What findings help celebrate community strengths as well as clarify needs, not from a distance but from within its core? Leveling the playing field, overcoming barriers through honoring diversity, committing to excellence in two-way knowledge transfers, building capacity for healthy communities while advancing knowledge and sharing the lessons: this is the “research” of partnered research.

Community-Partnered Cluster-Randomized Comparative Effectiveness Trial of Community Engagement and Planning or Resources for Services to Address Depression Disparities

ABSTRACTBACKGROUNDDepression contributes to disability and there are ethnic/racial disparities in access and outcomes of care. Quality improvement (QI) programs for depression in primary care improve outcomes relative to usual care, but health, social and other community-based service sectors also support clients in under-resourced communities. Little is known about effects on client outcomes of strategies to implement depression QI across diverse sectors.OBJECTIVETo compare the effectiveness of Community Engagement and Planning (CEP) and Resources for Services (RS) to implement depression QI on clients’ mental health-related quality of life (HRQL) and services use.DESIGNMatched programs from health, social and other service sectors were randomized to community engagement and planning (promoting inter-agency collaboration) or resources for services (individual program technical assistance plus outreach) to implement depression QI toolkits in Hollywood-Metro and South Los Angeles.PARTICIPANTSFrom 93 randomized programs, 4,440 clients were screened and of 1,322 depressed by the 8-item Patient Health Questionnaire (PHQ-8) and providing contact information, 1,246 enrolled and 1,018 in 90 programs completed baseline or 6-month follow-up.MEASURESSelf-reported mental HRQL and probable depression (primary), physical activity, employment, homelessness risk factors (secondary) and services use.RESULTSCEP was more effective than RS at improving mental HRQL, increasing physical activity and reducing homelessness risk factors, rate of behavioral health hospitalization and medication visits among specialty care users (i.e. psychiatrists, mental health providers) while increasing depression visits among users of primary care/public health for depression and users of faith-based and park programs (each p < 0.05). Employment, use of antidepressants, and total contacts were not significantly affected (each p > 0.05).CONCLUSIONCommunity engagement to build a collaborative approach to implementing depression QI across diverse programs was more effective than resources for services for individual programs in improving mental HRQL, physical activity and homelessness risk factors, and shifted utilization away from hospitalizations and specialty medication visits toward primary care and other sectors, offering an expanded health-home model to address multiple disparities for depressed safety-net clients.

Understanding the goals of service learning and community-based medical education: a systematic review.

Purpose To understand the educational goals of projects described as “service learning” or “community-based medical education” and to learn how relationships between medical schools and community members are discussed in these projects. Method In 2008, the authors performed a systematic qualitative content analysis of 57 articles, published since 1990, that addressed community placements for U.S. medical students. After the initial analysis, the academic-based authors conveyed their findings to their community partner and coauthor, received input on relevance and priority of themes, and then refined their analysis accordingly. Results The authors identified five main findings: (1) Considerable heterogeneity existed across projects, (2) although medical schools aimed to improve the health of the community, they did not routinely involve community members in the identification of local health priorities, (3) educators were enthusiastic about community-based education as a method for teaching complicated ideas such as social determinants of health, (4) many authors emphasized community placements as being equivalent to traditional curricula, and (5) the articles did not emphasize the concept of reciprocal knowledge transfer. Conclusions The authors found little emphasis on the reciprocal nature of partnerships between communities and medical schools. They propose that the principle of community partnership within medical education could train a cohort of medical students prepared to practice in the rapidly changing health care environment—one that now includes an important new agenda of community accountability.

Using Community Arts Events to Enhance Collective Efficacy and Community Engagement to Address Depression in an African American Community

OBJECTIVES We used community-partnered participatory research (CPPR) to measure collective efficacy and its role as a precursor of community engagement to improve depression care in the African American community of South Los Angeles. METHODS We collected survey data from participants at arts events sponsored by a CPPR workgroup. Both exploratory (photography exhibit; n = 747) and confirmatory (spoken word presentations; n = 104) structural equation models were developed to examine how knowledge and attitudes toward depression influenced community engagement. RESULTS In all models, collective efficacy to improve depression care independently predicted community engagement in terms of addressing depression (B = 0.64-0.97; P < .001). Social stigma was not significantly associated with collective efficacy or community engagement. In confirmatory analyses, exposure to spoken word presentations and previous exposure to CPPR initiatives increased perceived collective efficacy to improve depression care (B = 0.19-0.24; P < .05). CONCLUSIONS Enhancing collective efficacy to improve depression care may be a key component of increasing community engagement to address depression. CPPR events may also increase collective efficacy. Both collective efficacy and community engagement are relevant constructs in the South Los Angeles African American community.

Using a Community Partnered Participatory Research Approach to Implement a Randomized Controlled Trial: Planning Community Partners in Care

Quality improvement (QI) for depression in primary care can reduce disparities in outcomes. We describe how community-partnered participatory research was used to design Community Partners in Care, a randomized trial of community engagement to activate a multiple-agency network versus support for individual agencies to implement depression QI in underserved communities.

Strategies for Implementing and Sustaining Therapeutic Lifestyle Changes as Part of Hypertension Management in African Americans

Abstract African Americans with high blood pressure (BP) can benefit greatly from therapeutic lifestyle changes (TLC) such as diet modification, physical activity, and weight management. However, they and their health care providers face many barriers in modifying health behaviors. A multidisciplinary panel synthesized the scientific data on TLC in African Americans for efficacy in improving BP control, barriers to behavioral change, and strategies to overcome those barriers. Therapeutic lifestyle change interventions should emphasize patient self-management, supported by providers, family, and the community. Interventions should be tailored to an individuals cultural heritage, beliefs, and behavioral norms. Simultaneously targeting multiple factors that impede BP control will maximize the likelihood of success. The panel cited limited progress with integrating the Dietary Approaches to Stop Hypertension (DASH) eating plan into the African American diet as an example of the need for more strategically developed interventions. Culturally sensitive instruments to assess impact will help guide improved provision of TLC in special populations. The challenge of improving BP control in African Americans and delivery of hypertension care requires changes at the health system and public policy levels. At the patient level, culturally sensitive interventions that apply the strategies described and optimize community involvement will advance TLC in African Americans with high BP.

An Overview of Research and Evaluation Designs for Dissemination and Implementation

The wide variety of dissemination and implementation designs now being used to evaluate and improve health systems and outcomes warrants review of the scope, features, and limitations of these designs. This article is one product of a design workgroup that was formed in 2013 by the National Institutes of Health to address dissemination and implementation research, and whose members represented diverse methodologic backgrounds, content focus areas, and health sectors. These experts integrated their collective knowledge on dissemination and implementation designs with searches of published evaluations strategies. This article emphasizes randomized and nonrandomized designs for the traditional translational research continuum or pipeline, which builds on existing efficacy and effectiveness trials to examine how one or more evidence-based clinical/prevention interventions are adopted, scaled up, and sustained in community or service delivery systems. We also mention other designs, including hybrid designs that combine effectiveness and implementation research, quality improvement designs for local knowledge, and designs that use simulation modeling.

Strategies to Build Trust and Recruit African American and Latino Community Residents for Health Research: A Cohort Study

This study used Community Partnered Participatory Research (CPPR) to address low participation of racial and ethnic minorities in medical research and the lack of trust between underrepresented communities and researchers.

The Development and Evaluation of a Compassion Scale

Compassion is the capacity for being moved by suffering of others and wanting to help alleviate it. Compassion may mediate health benefits and hazards of social networks/relationships. The monitoring/management of level of compassion across social networks/relationships may be critical to health benefits’ preservation and social networks/relationships’ health hazards prevention. We developed and evaluated the psychometric properties of 10-item self-report measure of compassion among 310 respondents from the University and surrounding communities. The mean total score was 3.62 (SD=1.09). The item-to-total correlations ranged from 0.50–0.71. The mean inter-item correlation was 0.33. The internal consistency was 0.82. The scale correlated well with Sprecher and Fehr’s Compassionate Love Scale (r=0.66; p=.000). Two factors measuring same construct explained 57% of sample variance. The scale is user-friendly, easy to score, and characterized by good psychometric properties. It can be used to foster understanding of the impact of compassion on disease and outcomes across social networks/relationships.