Mariana Arevalo

Lay Navigator Model for Impacting Cancer Health Disparities

This paper recounts experiences, challenges, and lessons learned when implementing a lay patient navigator program to improve cancer care among medically underserved patients who presented in a primary care clinic with a breast or colorectal cancer abnormality. The program employed five lay navigators to navigate 588 patients. Central programmatic elements were the following: (1) use of bilingual lay navigators with familiarity of communities they served; (2) provision of training, education, and supportive activities; (3) multidisciplinary clinical oversight that factored in caseload intensity; and (4) well-developed partnerships with community clinics and social service entities. Deconstruction of healthcare system information was fundamental to navigation processes. We conclude that a lay model of navigation is well suited to assist patients through complex healthcare systems; however, a stepped care model that includes both lay and professional navigation may be optimal to help patients across the entire continuum.

Introducing Biospecimen Science to Communities: Tools from Two Cities

Background: This article describes community-engaged processes employed by two Community Network Program Center (CNPC) sites located in Tampa, Florida, and Buffalo, New York, toward the development of Spanish/English educational products about biobanking and biospecimen research.Methods: Each CNPC carried out a community-based participatory research (CBPR) approach that underscored six essential components that moved concepts to a final educational product in a highly participatory fashion. The similar CBPR processes at the two locations focused on the same topic, resulted in different engagement approaches and tools for their respective communities: 1) DVD and brochure toolkit and 2) PowerPoint, group program with audience response system (ARS).Results: We detail a comparison of methods and applications for using these tools among diverse community groups to advance understandings about genetic and biomedical research technologies.Conclusion: Ultimately, these tools and associated educational efforts emphasize the critical value of co-learning among academic and community members in biobanking and biospecimen research.

Abstract B100: Does patient navigation improve outcomes following a breast or colorectal screening abnormality? Outcomes of the Moffitt Cancer Center Patient Navigation Research Program

Introduction: Patient navigation is an intervention designed to assist patients in overcoming barriers to achieving a defined health outcome. This study examined the efficacy of a culturally appropriate lay patient navigation program aimed at reducing the time between a breast or colorectal cancer screening abnormality and definitive diagnosis among racially and ethnically diverse, farmworker, and other medically underserved populations of Tampa Bay, Florida. Methods: The study was guided by a Community Advisory Board and was one of the sites in the National Cancer Institute-funded Patient Navigation Research Program (PNRP). A lay patient navigation model was designed based on community input and formative research. Using a cluster randomized design, patients were recruited from 12 primary care sites (7 sites randomized to navigation and 5 sites randomized to usual care) that included federally qualified health centers and hospital-affiliated primary care clinics. Health care providers in the sites randomized to patient navigation referred patients to the study. Participants in the control clinics were identified using provider referral, billing data, or logs of medical procedures. Five trained patient navigators provided services to patients from the time of a breast or colorectal cancer screening abnormality to diagnostic resolution of the abnormality, and throughout cancer treatment if a patient was diagnosed with cancer. Participants’ medical records were reviewed using a standardized form to collect data defined by the Patient Navigation Research Program data dictionary. Using a generalized mixed-effects model accounting for group randomized trial design to assess intervention effects relative to baseline data collected prior to the intervention, we examined: 1) length of time between abnormality and definitive diagnosis, and 2) receipt of definitive diagnosis within the minimum follow-up period of 6 months. Results: A total of 1,267 patients participated in the study (588 navigated; 679 control). Most participants were Hispanic (57.8%) and female (94.2%). Seventy percent of participants achieved definitive diagnosis within 180 days. Navigated patients were more likely to reach diagnostic resolution by 180 days (74.5% of navigated patients versus 68.5% of control patients, p=0.007). Patient navigation did not have a statistically significant effect on time to diagnostic resolution in multivariable analysis that adjusted for race-ethnicity, language, insurance status, marital status, and cancer site (p=0.12). Conclusions: Patient navigation is an important intervention to increase the number of patients who receive recommended diagnostic care within 180 days. Although patient navigation increased the rate of patients who received diagnostic resolution of a breast or colorectal screening abnormality, it did not significantly reduce the overall time needed to complete diagnostic care. Further evaluation of PN programs applied to other patient populations across the cancer continuum is necessary to gain a better perspective on its usefulness. Acknowledgements: This study was funded by the National Cancer Institute through its Center to Reduce Cancer Health Disparities, National Institutes of Health, Department of Health and Human Services (Dr. Richard Roetzheim, PI; U01 CA 117281–01). Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):B100.

Abstract B8: Bringing science to underserved communities: Using community-based participatory research to evaluate biobanking educational materials

Introduction: Biospecimen donation and banking from diverse populations are critical for translational cancer research. Yet, little is known about community members’ perceptions about biospecimen donation and banking. The objectives of this study are to develop instruments to examine perceptions of biospecimen donation and banking and evaluate the efficacy of biobanking educational materials. Methods: Guided by a community-based participatory research (CBPR) approach, the study consists of two phases. In phase I, an instrument named Biobanking Attitudes and Knowledge Survey (BANKS) was developed in collaboration with the Tampa Bay Community Cancer Network (TBCCN) Biobanking Community Advisory Board to assess participants’ knowledge about and attitudes towards biospecimen collection, intention to donate biospecimens to a biobank, as well as self-efficacy regarding biospecimen donation. BANKS development and validation consists of iterative processes, including content analysis of 12 focus groups (n=95) for item generation; cognitive interviews (n=12 community members) to assess item comprehension and language appropriateness; content validity analyses with biobanking experts (n=5) to evaluate item relevancy to the constructs of interest (Knowledge, Attitudes and Self-efficacy); pilot-testing with community members; and instrument translation into Spanish. In Phase II, a small randomized control trial will be conducted with 60 community members to assess the efficacy of biobanking educational materials in increasing knowledge, positive attitudes, self-efficacy, and intentions to donate biospecimens to a biobank. The study will compare a multimedia biobanking educational intervention developed by TBCCN, with the National Cancer Institute brochure titled Providing Your Tissue for Research: What You Need to Know (NCI brochure). BANKS data will be collected following study enrollment (baseline), and then participants will be randomly assigned to one of two intervention groups (TBCCN multimedia intervention or NCI brochure). Follow-up interviews using the BANKS will be conducted between 7 and 14 days after enrollment. Participants’ medical records will be reviewed to assess group differences in biospecimen donation consent rates. Results: Using a CBPR approach, the project has successfully developed and validated a culturally and linguistically appropriate instrument to assess community members’ knowledge, attitudes, intention, and self-efficacy related to biospecimen donation. The BANKS is comprised of 21 attitudes items, 17 knowledge items, 11 self-efficacy items, and 2 intention items. Phase II of the study is expected to provide preliminary data on the efficacy of a multimedia biobanking educational intervention in improving perceptions of biospecimen donation and biobanking. Conclusion: Using a CBPR approach, data collected during this study have yielded a culturally appropriate instrument to assess community members’ perceptions about biobanking, the BANKS. The next step in the study is to use the BANKS to evaluate a multimedia biobanking intervention in increasing knowledge, positive attitudes, self-efficacy, and intention to donate biospecimens to a biobank among racial/ethnically and linguistically diverse populations in Tampa Bay, Florida. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):B8.

Abstract A32: Tackling cancer health disparities through science, training, and community: Generating new knowledge through continuing education

Background: Researchers, health providers, and community health workers serve as a bridge connecting the public to information and resources to aid in the prevention and control of disease. To address critical informational gaps and training needs about the intersection of culture and literacy in cancer care, we describe organizational and educational planning steps, needs assessment, community engagement methodologies, interactive learning activities, funding challenges, and process and outcome evaluation processes used to develop the national Cancer, Culture, and Literacy (CCL) biennial conference series. Methods: Systematic local and national planning processes were used to develop the CCL series emphasizing the exchange and dissemination of information covering innovative research, novel training programs, and emerging research communications. Attention is drawn to the role of the Tampa Bay Community Cancer Network, an NCI community network program, in the contribution of community member ideas and insights for conference program content relevancy. Results: Community-based participatory research figured prominently in planning processes that consistently resulted in drawing 275+ attendees from over 40 states. Conference themes and sessions that embody skill building and training in critical research and communications methods included: grant writing, communicating across cultures, emerging communication technologies, novel interventions that take into account culture and literacy, and cultural and contextual factors that underlie cancer disparities research. Interactive learning activities included: skill-building workshops, didactic plenary sessions, breakfast roundtables, lessons from the field, poster presentations, audience response system polling, and networking opportunities for cultivating ideas and disseminating evidence-based practices of cancer care. Community members served key roles in the planning and implementation of the conference series that attenuated unique perspectives for learning, serving on the planning committees, plenary panels, and roundtable discussions. The use of varied teaching modalities allowed for optimal information sharing and maximization of teachable moments for advancing knowledge, skills, and dialogue about factors that are critical to elucidating the roles of culture, language and literacy in the design, implementation and evaluation of successful communications, programs and interventions for diverse audiences. Evaluations indicated satisfaction and high enthusiasm with program content, wide application of the information in practice settings, and a clear need for continued opportunities to address culture, language, and literacy issues in cancer prevention and care among diverse populations. Conclusion: There is high transferability of processes, content, and myriad learning activities to other settings and regions whereby participation is encouraged, and practice development is reinforced to enhance proficiencies needed for impacting cancer health disparities. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):A32.

Abstract A18: To bank or not to bank: Engaging community members in discussions about biobanking

Background: Efforts to develop personalized medicine and individualized cancer care must be undertaken with widespread participation in biobanking especially among ethnic/racial populations that disproportionally experience excess burden of cancer incidence and mortality. The concept of biobanks is thought to be a promising way to identify the links between genetic and environmental factors in relation to disease, particularly cancer. Yet there is skepticism among the general public about the purpose of these repositories. If public engagement, understanding, and trust are established, biobanks may serve as an important resource to address issues of limited generalizability that are present in current clinical and genomics research. This research describes a series of community engagement processes and formative research activities (phase I), part of an ARRA pilot project to assess community attitudes, perceptions, beliefs, and informational needs on human biospecimen collection and biobanking. Congruent with the goals of the parent grant, the Tampa Bay Community Cancer Network, an NCI-funded community networks program for tackling health disparities, this project supports the development of collaborative community-academic linkages resulting in tools that limit and/or eliminate barriers to closing the gap on cancer health disparities. Methods: Interactive activities undertaken to engage community members on the topic of biobanking included educational presentations, a biobanking tour, and formation of a Community Advisory Group (CAG). The CAG, comprised of key community stakeholders, provided ongoing feedback on study methods, recruitment strategies, focus group content, educational materials, and offered important community insights about biobanking. It is expected that these activities will add to a growing community level of understanding of biobanking as “opening new pathways for researchers to bring about new treatments.” Currently underway are a series of 12 focus groups and 10 key informant interviews examining community members’ knowledge and attitudes about biospecimen collection; motivations toward research participation; ethical concerns; and learning preferences for the topic. Results: Data gained from this formative research phase will aid in identification of strategies to effectively frame educational messages with deference to health literacy, cultural competency, and encourage informed decision making (phase II). In keeping with a community-based participatory approach, study outputs include: 1) a CAG that could be used to advise future studies and inform policies on biobanking research; 2) a set of educational communication tools for advancing understandings about biomedical technologies in an easy-to-understand manner; and 2) linkages to Minority Biospecimen/Biobanking-Geographic Management Program Regional initiatives (BMap-GMap). Conclusion: Use of community engagement methods to improve communications on biospecimen collection/biobanking is one way to bring constituents’ voices into discussions and influence the way biobanks are implemented. It is expected that public engagement from idea conception to implementation will prove central to mobilizing community participation in biobanking. Future studies are expected to test the efficacy of these tools for decision priming. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):A18.