Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

BACKGROUND: Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods. OBJECTIVES: We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage breast cancer. METHODS: In-depth qualitative interviews were conducted with PAC members to obtain their input on the effectiveness of the project's participatory approach and identify barriers to participation. Results and Lessons Learned: Although there was general support for the aims of the study, patient knowledge gaps and meeting facilitation style limited participation. Members made suggestions on improving collaboration within the group that, when implemented, resulted in increased participation and revitalized interest in the project. CONCLUSIONS: Results suggest that engaging committee members in a process of evaluation and collective reflection during a research collaboration can break down barriers to collaboration, build relationships, create opportunities for co-learning and strengthen researchers' capacity to engage meaningfully with stakeholders.

Using community-based participatory research and organizational diagnosis to characterize relationships between community leaders and academic researchers.

Sustaining collaborations between community-based organization leaders and academic researchers in community-engaged research (CEnR) in the service of decreasing health inequities necessitates understanding the collaborations from an inter-organizational perspective. We assessed the perspectives of community leaders and university-based researchers conducting community-engaged research in a medium-sized city with a history of community-university tension. Our research team, included experts in CEnR and organizational theory, used qualitative methods and purposeful, snowball sampling to recruit local participants and performed key informant interviews from July 2011-May 2012. A community-based researcher interviewed 11 community leaders, a university-based researcher interviewed 12 university-based researchers. We interviewed participants until we reached thematic saturation and performed analyses using the constant comparative method. Unifying themes characterizing community leaders and university-based researchers' relationships on the inter-organizational level include: 1) Both groups described that community-engaged university-based researchers are exceptions to typical university culture; 2) Both groups described that the interpersonal skills university-based researchers need for CEnR require a change in organizational culture and training; 3) Both groups described skepticism about the sustainability of a meaningful institutional commitment to community-engaged research 4) Both groups described the historical impact on research relationships of race, power, and privilege, but only community leaders described its persistent role and relevance in research relationships. Challenges to community-academic research partnerships include researcher interpersonal skills and different perceptions of the importance of organizational history. Solutions to improve research partnerships may include transforming university culture and community-university discussions on race, power, and privilege.

Preparing for Disaster: a Cross-Sectional Study of Social Connection and Gun Violence.

Living in communities with persistent gun violence is associated with negative social, behavioral, and health outcomes, analogous to those of a natural disaster. Taking a disaster-preparedness approach may identify targets for community-based action to respond to on-going gun violence. We assessed the relevance of adapting a disaster-preparedness approach to gun violence and, specifically, the relationship between perceived collective efficacy, its subscales of social cohesion and informal social control, and exposure to gun violence. In 2014, we conducted a cross-sectional study using a community-based participatory research approach in two neighborhoods in New Haven, CT, with high violent crime rates. Participants were ≥18 years of age and English speaking. We measured exposure to gun violence by adapting the Project on Human Development in Chicago Neighborhoods Exposure to Violence Scale. We examined the association between perceived collective efficacy, measured by the Sampson Collective Efficacy Scale, and exposure to gun violence using multivariate modeling. We obtained 153 surveys (51% response rate, 14% refusal rate, and 35% non-response rate). Ninety-five percent reported hearing gunfire, 58% had friend or family member killed by gun violence, and 33% were physically present during a shooting. In the fully adjusted model, one standard deviation higher perceived collective efficacy was associated with lower reported exposure to gun violence (ß = -0.91, p < 0.001). We demonstrated that it is possible to activate community members and local officials to engage in gun violence research. A novel, community-based approach adapted from disaster-preparedness literature may be an effective framework for mitigating exposure to gun violence in communities with persistent gun violence.

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.

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.

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.

"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.

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.

Mental-health conditions, barriers to care, and productivity loss among officers in an urban police department.

BACKGROUND: Police officers are frequently exposed to situations that can negatively impact their mental health. METHODS: We conducted this study of an urban police department to determine 1) the prevalence of post-traumatic stress disorder (PTSD), depression, and alcohol abuse; 2) patterns of and barriers to mental-health services utilization; and 3) the impact these conditions have on productivity loss. RESULTS: Among 150 officers, PTSD (24%), depression (9%), and alcohol abuse (19%) were common. Only46.7% had ever sought mental-health services; the most commonly cited barriers to accessing serviceswere concerns regarding confidentiality and the potential"negative career impact." Officers with mental-health conditions had higher productivity loss (5.9% vs 3.4%, P<0.001) at an annual cost of $4,489 per officer. CONCLUSION: Mental-health conditions among police officers are common, and costly, yet most officers had never accessed mental-health services; many due to modifiable risk factors.

Preventing diabetes among Fair Haven families: a community-based approach to quality improvement.

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.

Understanding transitions in care from hospital to homeless shelter: a mixed-methods, community-based participatory approach.

BACKGROUND: Coordinated transitions from hospital to shelter for homeless patients may improve outcomes, yet patient-centered data to guide interventions are lacking. OBJECTIVES: To understand patients' experiences of transitions from hospital to a homeless shelter, and determine aspects of these experiences associated with perceived quality of these transitions. DESIGNS: Mixed methods with a community-based participatory research approach, in partnership with personnel and clients from a homeless shelter. PARTICIPANTS: Ninety-eight homeless individuals at a shelter who reported at least one acute care visit to an area hospital in the last year. APPROACH: Using semi-structured interviews, we collected quantitative and qualitative data about transitions in care from the hospital to the shelter. We analyzed qualitative data using the constant comparative method to determine patients' perspectives on the discharge experience, and we analyzed quantitative data using frequency analysis to determine factors associated with poor outcomes from patients' perspective. KEY RESULTS: Using qualitative analysis, we found homeless participants with a recent acute care visit perceived an overall lack of coordination between the hospital and shelter at the time of discharge. They also described how expectations of suboptimal coordination exacerbate delays in seeking care, and made three recommendations for improvement: 1) Hospital providers should consider housing a health concern; 2) Hospital and shelter providers should communicate during discharge planning; 3) Discharge planning should include safe transportation. In quantitative analysis of recent hospital experiences, 44 % of participants reported that housing status was assessed and 42 % reported that transportation was discussed. Twenty-seven percent reported discharge occurred after dark; 11 % reported staying on the streets with no shelter on the first night after discharge. CONCLUSIONS: Homeless patients in our community perceived suboptimal coordination in transitions of care from the hospital to the shelter. These patients recommended improved assessment of housing status, communication between hospital and shelter providers, and arrangement of safe transportation to improve discharge safety and avoid discharge to the streets without shelter.

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.

Project Access-New Haven: improving access to specialty care for patients without insurance.

BACKGROUND: Poor access to specialty care among uninsured adults threatens the delivery of quality health care and may contribute to the misuse and overuse of emergency departments and hospitals. INTERVENTION: We sought to improve access to specialty care through a program called Project Access-New Haven (PA-NH),which engages specialty physicians and hospitals to volunteer in a coordinated-care model for the uninsured. Patient navigators guide patients through the health-care network and help to alleviate administrative obstacles. RESULTS: Project Access-New Haven has been operational since August 2010. With >200 specialty physicians volunteering and strong commitments from local hospitals, comprehensive specialty care has been provided to 78 patients. Average wait-time for appointments is 17 days. CONCLUSION: PA-NH provides timely medical care and patient navigation foruninsured patientswith specialty-care needs. In the process, more physicians are participating in the care of vulnerable populations. Further data are needed to assess the potential cost-savings of PA-NH.

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.

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.

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.

Clinical social work education in palliative and end-of-life care: relational approaches for advanced practitioners.

This paper describes the first post-Master's program in the US in end-of-life care for social workers. Developed at the Smith College School for Social Work, this program used innovative relational methods in student recruitment, curricular design, supervision, and leadership development, based upon input from the faculty, students, and field supervisors. Collaborations emerged with funders, agencies, and programs nationally. The program was based on a pedagogical stance that clinical work with dying people requires the capacity to be fully present- in individual, group, and family work; in interdisciplinary meetings; and in advocating for quality and equity of care-while attending to diverse and at-risk populations. Students deepened their clinical skills and took leadership in the field of end-of-life care.