Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities.

The emergence of patient-centered outcomes research (PCOR) has created a paradigm shift in the way health outcomes research is designed, conducted and disseminated. While PCOR expands the potential for patients to play a key advisory role in every aspect of the research process, community-based participatory research (CBPR) has long provided this opportunity for engaging communities in research. CBPR is an excellent tool for achieving PCOR goals of improving the health of all people by providing them with evidence-based information for making informed healthcare decisions. We propose ways by which PCOR can effectively use CBPR principles to engage patients in general, and specifically patients from underserved communities. The hope is that this will help to reduce and eventually eliminate health disparities.

A Legacy of Science and Community Engagement via the Community Networks Program.

This special issue documents the progress of a unique group of research investigations that further legitimize the engagement of affected communities in quality cancer health disparities research and, the importance of mentoring and training of new and diverse health disparity researchers. The implications for the reduction and elimination of cancer health disparities within the United States are apparent. The diversity of populations included in these novel studies also has implications for addressing inequities in a global context.

Rural community-academic partnership model for community engagement and partnered research.

BACKGROUND: A rural community-academic partnership was developed in 1997 between the Eastern Shore Area Health Education Center (ESAHEC) and the University of Maryland School of Medicine's (UMSOM) Office of Policy and Planning (OPP). The model supports partnered research, bidirectional interactions, and community and health professional education. OBJECTIVES: The primary aim was to develop a sustainable community-academic partnership that addressed health and social issues on the rural Eastern Shore. LESSONS LEARNED: Mutual respect and trust led to sustained, bidirectional interactions and communication. Community and academic partner empowerment were supported by shared grant funds. Continual refinement of the partnership and programs occurred in response to community input and qualitative and quantitative research. RESULTS: The partnership led to community empowerment, increased willingness to participate in clinical trials and biospecimen donation, leveraged grant funds, partnered research, and policies to support health and social interventions. CONCLUSIONS: This partnership model has significant benefits and demonstrates its relevance for addressing complex rural health issues. Innovative aspects of the model include shared university grants, community inclusion on research protocols, bidirectional research planning and research ethics training of partners and communities. The model is replicable in other rural areas of the United States.

A model for bidirectional community-academic engagement (CAE): overview of partnered research, capacity enhancement, systems transformation, and public trust in research.

The University of Maryland's Office of Policy and Planning in collaboration with urban and rural community partners, planned and implemented a model for community-academic engagement (CAE) in partnered research and programs. The model addressed health disparities, cancer and tobacco-related diseases, and public trust in research. Environments have flourished that resulted in bidirectional community-academic interactions, and led to transformation of the academic environment and community capacity to identify and address health issues. This collaborative model produced: •    enhanced public trust in research; and •    enhanced community and Academic Health Center (AHC) capacity to address community health needs as partners. A unique feature of this model is AHC's shared grant funding with community partners serving diverse and medically underserved communities for predetermined roles in research, policy and educational programs. Over $18 million in grant funding was provided to community organizations. This paper presents an overview of this model as a case study.

The potential impact of comparative effectiveness research on the health of minority populations.

Minorities suffer more frequently and more severely from many diseases than do non-Hispanic whites, and they often receive lower-quality care, which leads to poorer health outcomes. Given the diversity of the US population, comparative effectiveness research should capture the health outcomes of racial and ethnic minority groups and investigate whether disparities reflect variations in care or different responses to treatment. We recommend a number of measures to ensure that this research addresses the needs of minorities, including greater attention to subgroup analysis. We also recommend the increased recruitment of minorities for clinical trials, and such measures as using community health workers to translate research results in ways that will increase their relevance to minority patients.

A descriptive analysis of state legislation and policy addressing clinical trials participation.

OBJECTIVES: This report describes state policy and legislation related to clinical trials participation and Maryland's model to enhance clinical trial availability and participation. METHODS: Descriptive review of state policy and legislation related to coverage for clinical trials costs based on data from the National Cancer Institute (NCI) State Cancer Legislative Database, the American Cancer Society, and NCI; additionally, discussion of Maryland's comprehensive multilevel clinical trial model comprising policy initiatives, community engagement, research, education, and infrastructure support. RESULTS: Twenty-four states have mandated clinical trial coverage through specific legislation or agreements since 1994. Covered benefits varied among the states. CONCLUSIONS: Besides cost and insurance barriers, there is a need to address important patient, physician and researcher, and structural barriers to clinical trial participation. Maryland provides a comprehensive model to address the multi-faceted clinical trial participation determinants as it tracks state and federal policy, documents trial barriers, and conducts community education.

Increasing pap smear utilization among Samoan women: results from a community based participatory randomized trial.

BACKGROUND: We tested the effectiveness of a theory-guided, culturally tailored cervical cancer education program designed to increase Pap smear use among Samoan women residing in the U.S. Territory of American Samoa. METHODS: We used a two-group, pretest-posttest design. The sample comprised 398 Samoan women age 20 and older recruited from Samoan churches. Women in the intervention group received a culturally tailored cervical cancer education program in three weekly sessions. The primary outcome was self-reported receipt of a Pap smear. RESULTS: Overall, there was a significant intervention effect, with intervention compared with control group women twice (adjusted odds ratio = 2.0, 95% confidence interval = 1.3-3.2, p < .01) as likely to self-report Pap smear use at the posttest. CONCLUSIONS: The findings support the efficacy of the multifaceted, theory-guided, culturally tailored community-based participatory cervical cancer education program for Samoan women in effecting positive changes in Pap smear use and cervical cancer related knowledge and attitudes.

Analysis of Maryland cancer patient participation in National Cancer Institute-supported cancer treatment clinical trials.

PURPOSE: We examined the relationship of sociodemographic factors, urban/rural residence, and county-level socioeconomic factors on accrual of Maryland patients with cancer to National Cancer Institute (NCI)-sponsored cancer treatment clinical trials. PATIENTS AND METHODS: Data were analyzed for the period 1999 to 2002 for 2240 Maryland patients with cancer accrued onto NCI-sponsored treatment trials. The extent to which Maryland patients with cancer and patients residing in lower socioeconomic and/or rural areas were accrued to cancer trials and were representative of all patients with cancer in Maryland was determined. Data were obtained from several sources, including NCI's Cancer Therapy Evaluation Program for Maryland patients with cancer in Cooperative Group therapeutic trials, Maryland Cancer Registry data on cancer incidence, and United States Census and the Department of Agriculture. RESULTS: For Maryland patients with cancer accrued onto NCI-sponsored treatment trials between 1999 and 2002, subgroups accrued at a higher rate included pediatric and adolescent age groups, white patients, female patients (for sex-specific tumors), patients with private health insurance, and patients residing in the Maryland National Capitol region. Moreover, between 1999 and 2002, there was an estimated annual decline (8.9% per year; P < .05) in the percentage of black patients accrued onto cancer treatment trials. Logistic regression models uncovered different patterns of accrual for female patients and male patients on county-level socioeconomic factors. CONCLUSION: Results highlight disparities in the accrual of Maryland patients with cancer onto NCI-sponsored treatment trials based on patient age, race/ethnicity, geography of residence, and county-level socioeconomic factors. Findings provide the basis for development of innovative tailored and targeted educational efforts to improve trial accrual, particularly for the underserved.

Needs and preferences for receiving mental health information in an African American focus group sample.

The purpose of this study is to better understand the mental health/illness information and service delivery preferences among African American residents of Baltimore. We conducted four focus groups (n = 42) among African American adults currently unconnected with the mental health system. Participants expressed fear of stigma and perceptions of racism as major barriers to seeking information and/or services and discussed some normalizing strategies to address these barriers. African Americans harbor cultural and traditional beliefs regarding mental illness which could also act as barriers. Findings have implications for imparting acceptable and culturally sensitive mental health education and service delivery programs in community settings.

Clinical trials: the art of enrollment.

OBJECTIVES: Enrollment barriers and multidisciplinary approaches to increase cancer trials participation are presented. Recruitment barriers, research in Maryland, and a Best Practice for cancer trials are discussed. DATA SOURCES: Journal and research articles, web sites. CONCLUSION: Clinical trials have produced prevention and care advances for cancer and other diseases. Trial enrollment is lower for minorities and underserved communities. A comprehensive program for addressing enrollment barriers should incorporate research on barriers, multidisciplinary teams, and education and trial infrastructure in community settings. IMPLICATIONS FOR NURSING PRACTICE: Health disparities training, including culturally appropriate enrollment approaches for education and retention of underserved communities, should incorporate community stakeholders and nurse/physician researchers.

A randomized trial comparing web-based decision aids on prostate cancer knowledge for African-American men.

OBJECTIVES: Few decision aids are tailored for African-American men. We sought to determine if web-based decision aids increased knowledge of prostate cancer screening among African men. METHODS: This postintervention, quasiexperimental research measured knowledge of prostate cancer screening among African-American men following receipt of 1 of 2 web-based decision aids: enhanced or usual care. Men ages 40-65 were recruited at the annual convention of the Prince Hall Masons in the summer of 2007, which was attended by 1170 masons. The primary outcome was knowledge of prostate cancer screening. RESULTS: There were 87 participants in the sample with a mean age of 52 years (standard deviation = 6.9). Forty-six masons were randomized to the enhanced decision aid, and 41 masons were randomized to the usual care decision aid. Knowledge scores were statistically significantly higher among the men receiving the enhanced decision aid compared to the usual care decision aid after simultaneously adjusting for age, educational level, marital status, family history, previous prostate specific antigen test and digital rectal exam (p = 0.01). CONCLUSION: We found evidence that the enhanced web decision aid was significantly more effective than the usual care decision aid in promoting knowledge of the benefits, limitations and risks of prostate cancer screening. Web-based sites may be effective in facilitating discussions about screening between patients and health care providers.

Analysis of Maryland cancer patient participation in national cancer institute-supported cancer treatment clinical trials.

PURPOSE: We examined the relationship of sociodemographic factors, urban/rural residence, and county-level socioeconomic factors on accrual of Maryland patients with cancer to National Cancer Institute (NCI) -sponsored cancer treatment clinical trials. PATIENTS AND METHODS: Data were analyzed for the period 1999 to 2002 for 2,240 Maryland patients with cancer accrued onto NCI-sponsored treatment trials. The extent to which Maryland patients with cancer and patients residing in lower socioeconomic and/or rural areas were accrued to cancer trials and were representative of all patients with cancer in Maryland was determined. Data were obtained from several sources, including NCI's Cancer Therapy Evaluation Program for Maryland patients with cancer in Cooperative Group therapeutic trials, Maryland Cancer Registry data on cancer incidence, and United States Census and the Department of Agriculture. RESULTS: For Maryland patients with cancer accrued onto NCI-sponsored treatment trials between 1999 and 2002, subgroups accrued at a higher rate included pediatric and adolescent age groups, white patients, female patients (for sex-specific tumors), patients with private health insurance, and patients residing in the Maryland National Capitol region. Moreover, between 1999 and 2002, there was an estimated annual decline (8.9% per year; P < .05) in the percentage of black patients accrued onto cancer treatment trials. Logistic regression models uncovered different patterns of accrual for female patients and male patients on county-level socioeconomic factors. CONCLUSION: Results highlight disparities in the accrual of Maryland patients with cancer onto NCI-sponsored treatment trials based on patient age, race/ethnicity, geography of residence, and county-level socioeconomic factors. Findings provide the basis for development of innovative tailored and targeted educational efforts to improve trial accrual, particularly for the underserved.

Outcomes from a comprehensive stroke telemedicine program.

Our team has studied the use of telemedicine to overcome obstacles to providing acute stroke care and expanding stroke education. We report a summary of our outcomes to provide evidence supporting greater development of stroke telehealth systems. Stroke telemedicine is audio-video communication (teleconferencing) between a stroke specialist and a remote party requiring stroke services. Using several models, we tested the validity, reliability, and effectiveness of telemedicine versus telephone consultations and face-to-face (traditional) medical care and education. Because of the challenges inherent to technology studies, we found a prospective, case control design most practical for testing hypotheses related to a comparison of telemedicine and traditional service delivery. Telemedicine-assisted neurologic evaluation and stroke diagnosis were as valid and reliable as traditionally delivered services. Clinical effectiveness was demonstrated by shortening times to treatment (17 [telemedicine] vs. 33 [control] minutes; p = 0.003) and increasing tissue plasminogen activator use at a remote hospital (from 5% to 24%). Evaluation of telemedicine as a means to expand stroke education to distant communities revealed that telemedicine and direct education achieve equivalent academic results. Stroke services delivered by telemedicine are safe, efficacious, and comparable to those rendered face-to-face. Telemedicine is a means of providing disability-reducing therapies earlier to a large number of patients. The current, geographically defined scheme for telemedicine service reimbursement fails to recognize that the main barrier to stroke care is lack of available stroke specialists. Contractual and third-party reimbursement structures should be modified to surmount this impediment to extending stroke specialty care and community education.

Breast cancer epidemiology in blacks and whites: disparities in incidence, mortality, survival rates and histology.

BACKGROUND: This study presents black-white breast cancer statistics, tumor histology and receptor status, and treatment patterns for all ages and by age groups (< 40, 40-49, and > or = 50). METHODS: The study used data from the National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) program for the time period 1995-2004. Age-adjusted incidence, mortality, relative survival rates, tumor grade, histology and receptor status, and treatment patterns for invasive breast cancer were calculated for nine SEER cancer registries for 1995-2004. RESULTS: Invasive breast cancer age-adjusted incidence for black women age < 40 was significantly higher than those for white women (rate ratio = 1.16, 95% confidence interval: 1.10-1.23). Age-adjusted mortality rate for black women age < 40 was twice that for white women. Compared to white women, black women were significantly more likely to be diagnosed with regional or distant disease, have lower relative five-year survival rate and have higher likelihood of being diagnosed with tumors with poorer prognosis. Black women were less likely to receive breast cancer surgery as part of the treatment plan. CONCLUSIONS: Race/ethnic disparities in invasive breast cancer epidemiology, prognostic indicators and treatment patterns exist between black and white women. The study findings support the need for innovative research, especially on the multifaceted determinants of the differential epidemiology of breast cancer. Equally important, there is a need for evidence-guided equal delivery of quality care to eliminate breast cancer disparities among black women.

Results of a randomized trial to increase mammogram usage among Samoan women.

BACKGROUND: There are no effective breast cancer education programs targeting Samoan women. We tested the effectiveness of a theory-guided, culturally appropriate breast cancer education program (the intervention) designed to increase mammography use among Samoan women. METHODS: This community-based participatory cluster-randomized controlled intervention trial used a parallel two-group design. The sample consisted of 776 women aged 42 and older who had not had a mammogram in the preceding 2 years. The primary outcome was self-reported mammogram use between pretest and posttest. RESULTS: Overall, there was no statistically significant intervention effect, although the odds of self-reported mammogram use were higher in the intervention than the control group (odds ratio (OR), 1.26; 95% confidence interval (95% CI), 0.74, 2.14; P = 0.39). Exploratory subgroup analyses found that the intervention was effective only among women who were aware of mammograms but had never previously obtained one (OR, 1.99; 95% CI, 1.03, 3.85; P = 0.04). Low need for social support and lack of endorsement of culture-specific beliefs about breast cancer were associated with mammogram use in this group. In women unaware of mammography at pretest, high perceived susceptibility to breast cancer and endorsement of culture-specific beliefs were associated with mammogram use. For women who had previously obtained a mammogram, lower self-efficacy was associated with mammogram use. Intervention compared with control group women had significantly higher levels of knowledge of risk factors and lower endorsement of culture-specific beliefs at posttest. CONCLUSIONS: Results suggest that a multifaceted education intervention may improve mammogram usage for certain subgroups of Samoan women.

Mammography screening and Pacific Islanders: role of cultural and psychosocial factors.

BACKGROUND: There is little information on the associations between cultural and psychosocial factors and not receiving a mammogram by Samoan women. METHODS: Survey of 809 Samoan women aged 42 years and older. RESULTS: The likelihood of nonreceipt was lower for women who had higher perceptions of severity, agreement with a mammogram's efficacy, higher group norms, higher self-efficacy, and those who placed greater importance on the breast. The likelihood of nonreceipt was higher for women who harbored misconceptions and endorsed culture-specific beliefs. CONCLUSIONS: Samoan women need specifically tailored breast cancer education which incorporates cultural and psychosocial factors important for behavior change.