Researcher perspectives on embedding community stakeholders in T1-T2 research: A potential new model for full-spectrum translational research.

Effective community engagement in T3-T4 research is widespread, however, similar stakeholder involvement is missing in T1-T2 research. As part of an effort to embed community stakeholders in T1-T2 research, an academic community partnered team conducted discussion groups with researchers to assess perspectives on (1) barriers/challenges to including community stakeholders in basic science, (2) skills/training required for stakeholders and researchers, and (3) potential benefits of these activities. Engaging community in basic science research was perceived as challenging but with exciting potential to incorporate "real-life" community health priorities into basic research, resulting in a new full-spectrum translational research model.

Integrating Community Expertise into the Academy: South Los Angeles' Community-Academic Model for Partnered Research.

THE PROBLEM: Charles R. Drew University (CDU) and community partners wanted to create a structure to transcend traditional community-academic partnerships. They wanted community leaders integrated into CDU's research goals and education of medical professionals. PURPOSE OF ARTICLE: To explain the establishment of the Community Faculty Program, a new model of community-academic partnership that integrates community and academic knowledge. KEY POINTS: Using CBPR principles, CDU and community partners re-conceptualized the faculty appointment process and established the Division of Community Engagement (DCE). CDU initially offered academic appointments to nine community leaders. Community Faculty contributes to CDU's governance, education, research, and publication goals. This model engaged communities in translational research and transformed the education of future healthcare professionals. CONCLUSION: The Community Faculty Program is a new vision of partnership. Using a CBPR approach with committed partners, a Community Faculty Program can be created that embodies the values of both the community and the academy.

A Community Engagement Symposium to Prevent and Improve Stroke Outcomes in Diverse Communities.

BACKGROUND: Racial/ethnic minorities have a higher burden of stroke, but lower awareness and understanding of stroke and its risk factors. Our community-academic collaborative hosted a symposium in South Los Angeles to increase awareness about stroke, provide information on the Los Angeles Stroke Intervention and Research Program (SPIRP), and facilitate bidirectional communication between researchers and community stakeholders. OBJECTIVES: We discuss our partnered approach to increase stroke awareness, elicit community perspectives and perceptions about stroke prevention and research participation, and increase community involvement in research using a community engagement symposium (CES). METHODS: We used a community-partnered participatory research (CPPR) conference framework to guide symposium planning, implementation and analysis. The morning session included clinical lectures, a panel of researchers describing LA SPIRP, and a panel presentation by stroke caregivers and survivors. In afternoon breakout sessions, attendees identified 1) community-based strategies to prevent stroke and 2) methods to increase recruitment of diverse populations in stroke research studies. Attendees were surveyed about stroke knowledge before and after the morning session. Data from breakout sessions were analyzed using content analysis and pile sorting to identify themes. CONCLUSIONS: We found that the CES based on CPPR principles was effective method to increase short-term stroke awareness and stimulate discussion about stroke research among community members and community stakeholders who serve racial/ethnic minorities.

Sampling and Recruiting Community-Based Programs Using Community-Partnered Participation Research.

The inclusion of community partners in participatory leadership roles around statistical design issues like sampling and randomization has raised concerns about scientific integrity. This article presents a case study of a community-partnered, participatory research (CPPR) cluster-randomized, comparative effectiveness trial to examine implications for study validity and community relevance. Using study administrative data, we describe a CPPR-based design and implementation process for agency/program sampling, recruitment, and randomization for depression interventions. We calculated participation rates and used cross-tabulation to examine balance by intervention status on service sector, location, and program size and assessed differences in potential populations served. We achieved 51.5% agency and 89.6% program participation rates. Programs in different intervention arms were not significantly different on service sector, location, or program size. Participating programs were not significantly different from eligible, nonparticipating programs on community characteristics. We reject claims that including community members in research design decisions compromises scientific integrity. This case study suggests that a CPPR process can improve implementation of a community-grounded, rigorous randomized comparative effectiveness trial.

Understanding Perceived Benefit of Early Cancer Detection: Community-Partnered Research with African American Women in South Los Angeles.

BACKGROUND: African American women have lower 5-year cancer survival rates than non-Latino White women. Differences in perceived benefits of early cancer detection among racial/ethnic groups may affect cancer-screening behaviors. This study assessed correlates of perceived benefits of early breast, cervical and colorectal cancer detection among 513 African American women. METHODS: Using a community-partnered participatory research approach, we conducted a survey on cancer screening, risk behaviors, and related knowledge and attitudes among African American parishioners at 11 churches in South Los Angeles, a neighborhood that experiences one of the highest cancer mortality rates in California. RESULTS: African American women who participated in this study were more likely to believe that chances for survival are very good or good after early detection of breast cancer (74%) than after early detection of colorectal (51%) and cervical cancer (52%). Multivariate analyses show that perceived benefit of early cancer detection is associated with higher cancer knowledge and having discussed one's cancer risk with a doctor. CONCLUSIONS: Given that 5-year survival rates for early stage breast, cervical, and colorectal cancer range from 84% to 93%, our data suggest that a substantial proportion of African American women in South Los Angeles are not aware of the benefits of early detection, particularly of colorectal and cervical cancers. Programs that increase cancer knowledge and encourage a discussion of individual's cancer risk with a doctor may be able to increase perceived benefit of early detection, a construct that has been shown to be associated with cancer screening in some studies.

Correlates of perceived risk of developing cancer among African-Americans in South Los Angeles.

There are differences in cancer-risk perception among racial/ethnic groups that may affect health risk behaviors. Using a community partnered-participatory research approach, we conducted a survey on cancer screening, risk behaviors, and related knowledge/attitudes within 11 churches in South Los Angeles with predominantly African-American parishioners. This analysis examines correlates of perceived risk of developing cancer among 755 African American adults. Almost 15 % of participants indicated higher perceived risk for cancer compared to the average man/woman of the same age, 38 % indicated same risk, whereas 48 % perceived lower risk. Sixty-nine individuals (9 %) reported a cancer history and 63 % reported at least one blood relative with cancer. Controlling for demographic characteristics and healthcare access, participants who reported higher risk of cancer had higher level of cancer-related knowledge; were current and ex-smokers; had poorer health status; had a blood relative with cancer; had a cancer history; and had discussed their risk of cancer with their doctor. The bivariate association between high perceived cancer risk and lack of exercise and obesity disappeared after adjusting for demographic characteristics and perceived health status. Our data suggest that a substantial proportion of African Americans in South Los Angeles may underestimate their cancer risk. Additionally, lack of exercise and obesity are not recognized as independent cancer risk factors as much as smoking and personal and family history of cancer. Next steps will be to inform participating churches about our findings and explore their interest in taking steps to reduce health risk behaviors among their parishioners.

Comparing perceived and test-based knowledge of cancer risk and prevention among Hispanic and African Americans: an example of community participatory research.

BACKGROUND: Most theoretical formulations acknowledge that knowledge and awareness of cancer screening and prevention recommendations significantly influence health behaviors. This study compares perceived knowledge of cancer prevention and screening with test-based knowledge in a community sample. We also examine demographic variables and self-reported cancer screening and prevention behaviors as correlates of both knowledge scores, and consider whether cancer related knowledge can be accurately assessed using just a few, simple questions in a short and easy-to-complete survey. METHODS: We used a community-partnered participatory research approach to develop our study aims and a survey. The study sample was composed of 180 predominantly African American and Hispanic community individuals who participated in a full-day cancer prevention and screening promotion conference in South Los Angeles, California, on July 2011. Participants completed a self-administered survey in English or Spanish at the beginning of the conference. RESULTS: Our data indicate that perceived and test-based knowledge scores are only moderately correlated. Perceived knowledge score shows a stronger association with demographic characteristics and other cancer related variables than the test-based score. Thirteen out of twenty variables that are examined in our study showed a statistically significant correlation with the perceived knowledge score, however, only four variables demonstrated a statistically significant correlation with the test-based knowledge score. CONCLUSION: Perceived knowledge of cancer prevention and screening was assessed with fewer items than test-based knowledge. Thus, using this assessment could potentially reduce respondent burden. However, our data demonstrate that perceived and test-based knowledge are separate constructs.