Georgina Lucas

Dissemination of Results in Community-Based Participatory Research

CONTEXT Community-based participatory research (CBPR) has been promoted as an approach to understanding complex health problems not amenable to research conducted solely by outside investigators. Although broad dissemination of research results is a key element of the CBPR approach, existing dissemination efforts have not been assessed. EVIDENCE ACQUISITION In this systematic review, researchers evaluated studies utilizing the CBPR approach to characterize dissemination of research results beyond scientific publication. Specifically, the focus was on dissemination to community participants and the general public. The literature search encompassed articles published between January 1, 2005, and December 31, 2009. Corresponding authors were also invited to complete a web-based survey. Data were collected and analyzed between July 1, 2008, and March 8, 2010. EVIDENCE SYNTHESIS In all, 101 articles met inclusion criteria. All articles were assessed for the quality of community involvement in research. Scores ranged from 1.4 to 3.0 (on a 3-point scale), with a mean of 2.3. The 21 articles in which an intervention was evaluated were scored for the rigor of research methods. Scores ranged from 2.0 to 2.9 (on a 3-point scale), with a mean of 2.4. Dissemination beyond scientific publication was reported in 48% of publications with varying levels of detail. However, among survey respondents, 98% reported dissemination of results to community participants and 84% reported dissemination to the general public. CONCLUSIONS Among research meeting strict criteria for inclusion as CBPR, dissemination beyond scientific publication is largely occurring. However, myriad challenges to timely and widespread dissemination remain, and current dissemination to community participants and the general public is variable.

Teaching Community-Based Participatory Research Principles to Physicians Enrolled in a Health Services Research Fellowship

To improve health and reduce inequities through health services research, investigators are increasingly actively involving individuals and institutions who would be affected by the research. In one such approach, community-based participatory research (CBPR), community members participate in every aspect of designing and implementing research with the expectation that this process will enhance the translation of research into practice in communities. Because few physician researchers have expertise in such community-based approaches to research, the Robert Wood Johnson Foundation leadership expanded the mission of the Robert Wood Johnson Clinical Scholars Program (RWJCSP), which historically focused on health services and clinical research, to include training and mentored experiences in CBPR. The authors discuss the three years of experience (2005–2008) implementing the new community research curricula at the four RWJCSP sites: University of California, Los Angeles; University of Pennsylvania in Philadelphia; University of Michigan in Ann Arbor; and Yale University in New Haven. Three common goals and objectives are identified across sites: teaching the principles of CBPR, providing opportunities for conducting CBPR, and making an impact on the health of the communities served. Each site’s different approaches to teaching CBPR based on the nature of the existing community and academic environments are described. The authors use illustrative quotes to exemplify three key challenges that training programs face when integrating community-partnered approaches into traditional research training: relationship building, balancing goals of education/scholarship/relationships/product, and sustainability. Finally, the authors offer insights and implications for those who may wish to integrate CBPR training into their research training curricula.

A Physician Team's Experiences in Community-Based Participatory Research: Insights into Effective Group Collaborations

BACKGROUND Postdoctoral fellows from the Robert Wood Johnson Clinical Scholars Program are among a growing number of physician-researchers training in community-based participatory research (CBPR). These fellows are uniquely positioned to observe and evaluate CBPR training needs and the experience of collaboratively conducting a CBPR project. PURPOSE To describe, from the perspective of physician-researchers, experiences in intragroup and intergroup collaborations while conducting CBPR. METHODS During a 2-year fellowship, a group of seven fellows received 6 months of didactic training and then spent 18 months conducting a mentored CBPR project. The CBPR project was complemented by a 2-year facilitated leadership seminar, which allowed for reflection on intragroup (among fellows) and intergroup (fellows/community members) relationships throughout the CBPR process. RESULTS Seven core principles of CBPR were found to apply to not only intergroup but also intragroup relationships: (1) building trust, (2) finding a shared interest, (3) power-sharing, (4) fostering co-learning and capacity building among partners, (5) building on existing strengths, (6) employing an iterative process, and (7) finding a balance between research and action for the mutual benefit of all partners. CONCLUSIONS Establishing and maintaining relationships is at the core of CBPR. The development of intragroup relationships paralleled the development of intergroup relationships with community members. Applying the core principles of CBPR to the development of intragroup relationships provided experience that may have enhanced relationships with community partners. An a priori acknowledgement of the importance of relationships and the time needed to develop and manage those relationships may add to the CBPR training experience and assist in successfully executing collaborative projects.

Building community capacity: sustaining the effects of multiple, two-year community-based participatory research projects.

Background: The time-limited nature of health and public health research fellowships poses a challenge to trainees’ and community partners’ efforts to sustain effective, collaborative, community-based participatory research (CBPR) relationships.Objectives: This paper presents CBPR case studies of partnerships between health services research trainees and community organization leaders in a medium-sized city to describe how participation in the partnership altered community partners’ understanding and willingness to conduct research and to engage with research-derived data.Methods: Trainees and faculty used participatory methods with community leaders to identify research questions, and conduct and disseminate research. Throughout the process, trainees and faculty included research capacity building of community partners as a targeted outcome. Community partners were asked to reflect retrospectively on community research capacity building in the context of CBPR projects. Reflections were discussed and categorized by the authorship team, who grouped observations into topics that may serve as a foundation for development of future prospective analyses.Results: Important ideas shared include that trainee participation in CBPR may have an enduring impact on the community by increasing the capacity of community partners and agencies to engage in research beyond that which they are conducting with the current trainee.Conclusion: We posit that CBPR with research trainees may have an additive effect on community research capacity when it is conducted in collaboration with community leaders and focuses on a single region. More research is needed to characterize this potential outcome.

Improving the Quality of Discharge Care for the Homeless: A Patient- centered Approach

Homeless patients are at risk for low-quality discharge care, yet there are limited patient-centered data to guide improvement. We explored relationships between assessment of housing status by hospital staff and quality of discharge care using quantitative and qualitative data from interviews and chart reviews with 98 homeless patients: 80% male, mean homelessness 2.8 years, mean age 44. Patient-reported performance of discharge care varied substantially across seven domains from 16-75% and chart review documented lower performance than patient report. Over half (56%) were not asked about their housing status and multivariable logistic regression showed assessment of housing status was independently associated with higher performance in five domains: discussions about cost of medications, physical activity levels, diet, transportation, and mental health follow-up. Qualitative data revealed patient concerns about stigmatization from disclosure of housing status. Our findings suggest that addressing housing status in acute care settings while avoiding stigmatization may improve discharge care for homeless patients.

Expanding the Safety Net of Specialty Care for the Uninsured: A Case Study

OBJECTIVE To describe core principles and processes in the implementation of a navigated care program to improve specialty care access for the uninsured. STUDY SETTING Academic researchers, safety-net providers, and specialty physicians, partnered with hospitals and advocates for the underserved to establish Project Access-New Haven (PA-NH). PA-NH expands access to specialty care for the uninsured and coordinates care through patient navigation. STUDY DESIGN Case study to describe elements of implementation that may be relevant for other communities seeking to improve access for vulnerable populations. PRINCIPAL FINDINGS Implementation relied on the application of core principles from community-based participatory research (CBPR). Effective partnerships were achieved by involving all stakeholders and by addressing barriers in each phase of development, including (1) assessment of the problem; (2) development of goals; (3) engagement of key stakeholders; (4) establishment of the research agenda; and (5) dissemination of research findings. CONCLUSIONS Including safety-net providers, specialty physicians, hospitals, and community stakeholders in all steps of development allowed us to respond to potential barriers and implement a navigated care model for the uninsured. This process, whereby we integrated principles from CBPR, may be relevant for future capacity-building efforts to accommodate the specialty care needs of other vulnerable populations.

You get caught up: youth decision-making and violence.

Violence is a major cause of morbidity and mortality among adolescents. We conducted serial focus groups with 30 youth from a violence prevention program to discuss violence in their community. We identified four recurrent themes characterizing participant experiences regarding peer decision-making related to violence: (1) youth pursue respect, among other typical tasks of adolescence; (2) youth pursue respect as a means to achieve personal safety; (3) youth recognize pervasive risks to their safety, frequently focusing on the prevalence of firearms; and (4) as youth balance achieving respect in an unsafe setting with limited opportunities, they express conflict and frustration. Participants recognize that peers achieve peer-group respect through involvement in unsafe or unhealthy behavior including violence; however they perceive limited alternative opportunities to gain respect. These findings suggest that even very high risk youth may elect safe and healthy alternatives to violence if these opportunities are associated with respect and other adolescent tasks of development.

Preventing Diabetes among Fair Haven Families: A Community-Based Approach to Quality Improvement

Summary: In this paper, we describe our efforts to integrate the Diabetes Prevention Program and the Bright Bodies program into a coordinated intensive lifestyle intervention program for families living in Fair Haven, an underserved Hispanic neighborhood in New Haven, Connecticut with high rates of obesity and prediabetes in adults and children.

Improving post-hospital care for people who are homeless: Community-based participatory research to community-based action

This article discusses how community-based participatory research (CBPR) on hospital care transitions in New Haven, Connecticut led to the development of a new medical respite program to better serve patients who are homeless. Key insights include: • Homelessness is an important driver of hospital utilization and must be addressed in efforts to decrease hospital readmissions. • Hospitals and community organizations often serve a shared patient/client base and can work together to develop innovative programs that are beneficial to all parties. • Community-based participatory research methods are particularly conducive to producing research that is translatable to policy and new programs. • Targeted dissemination of research results played a pivotal role in securing resources and funding for the new program.

Contraceptive implant knowledge and practices of providers serving an urban, low-income community.

Contraceptive implants are highly effective but infrequently used by low-income women, who are at high risk of unintended pregnancy. Provider factors that may affect implant acceptance merit further exploration. We surveyed 66 clinicians serving an urban, low-income community from adult primary care, women’s health, and adolescent practices. We assessed implant education, knowledge, perceptions of accessibility and cost, and patient selection practices. Education about implants varied from 15% in adult primary care to 30% in adolescent practice and 75% in women’s health. Among women’s health providers, 54% were trained to insert implants. Despite having eligible candidates, some providers were unlikely to recommend implants to patients who are nulliparous (8%), teens (22%), depressed (24%) or obese (22%). Forty-one percent of providers reported insertion wait-times of at least three weeks. Among low-income women, deficits in provider education, restrictive practice patterns, and long insertion wait times may affect contraceptive implant use.