Elisa S. Weiss

The promise of community-based advocacy and education efforts for increasing cancer clinical trials accrual.

Only 3% of cancer patients participate in cancer clinical trials (CCTs). A number of barriers to participation, particularly for minority groups, can be addressed through community-focused education and advocacy efforts. Working with community partnerships, a pilot program sought to change knowledge, attitudes, and role behaviors among community leaders, primary care providers (PCPs), and clinical researchers about CCTs, to increase patient awareness of and participation in CCTs. A mixed method evaluation utilized quantitative analysis of surveys administered to participants during the program period (2006–2008) and qualitative data from interviews with key participants. Programmatic efforts were effective in increasing knowledge and training community leaders and PCPs to disseminate messages about clinical trials, and ultimately increasing patient inquiries about local trials. Training improved cultural competency skills among clinical researchers to recruit and retain CCT participants. Partnerships fostered new processes and structures to facilitate CCT participation in their communities. Clinical trials education and advocacy efforts through community partnerships have an important role in enhancing clinical trial access and in increasing clinical trial participation. Oncologists’ involvement in and leadership of such partnerships are critical to promoting CCT accrual, particularly for minority groups.

The Role of Leadership and Management in Six Southern Public Health Partnerships: A Study of Member Involvement and Satisfaction

Research has led to greater understanding of what is needed to create and sustain well-functioning public health partnerships. However, a partnership’s ability to foster an environment that encourages broad member involvement in discussions, decision making, and activities has received scant empirical attention. This study examined the relationship between partnership members’ perceptions of how well leadership and management facilitated their involvement, and their satisfaction with their role and influence within the partnership. Data came from 60 individuals who participated in two waves of a quantitative process evaluation of six southern interorganizational partnerships, formed as part of a national pilot project to increase cervical and breast cancer screening rates. Results suggested that environments fostering broad partner involvement were associated with measures of member satisfaction, controlling for other partnership characteristics. Findings indicated that facilitation of member involvement deserves increased consideration from researchers and practitioners as an indicator of the quality of partnership functioning.

The Implementation Road Engaging Community Partnerships in Evidence-Based Cancer Control Interventions

Southern rural and underserved counties have high proportions of individuals with increased mortality for cervical and breast cancers. To improve the integration of behavioral research into practice, the dissemination and implementation of efficacious interventions to encourage the use of screening have increased in recent years. This study addressed gaps in the dissemination and implementation of evidence-based interventions with a pilot called Team Up. Qualitative interviews with 24 key individuals in six state-level partnerships explored partnership characteristics that influenced selection and use of evidence-based interventions among low-income, rarely or never screened women. Guided by diffusion of innovations theory and the Lasker and Weiss partnership functioning model, interviews about the intervention centered on (a) knowledge surrounding evidence base; (b) identification, selection, and adoption; (c) planning and adaptation; (d) implementation; and (e) partnership reflections and impact. Using grounded theory and content analysis, data revealed that lack of communication and high partner turnover hindered adoption and adaptation, whereas failure of partnership leaders to engage local stakeholders and lack of sufficient funds hampered implementation. Delivery of evidence-based interventions was more effective when partnerships included local partners in early decision making and when coaches were introduced to facilitate strategic thinking about translating evidence-based interventions into practice. A challenge for public health partnerships was the translation of interventions into successful programs, such that underserved communities benefited from early detection intervention research.

Beliefs About Participating in Research Among a Sample of Minority Persons Living with HIV/AIDS in New York City

Despite substantial data documenting the challenges in recruiting racial and ethnic minorities into research studies, relatively little is known about the attitudes and beliefs toward research that are held by racial and ethnic minorities living with HIV/AIDS. The present study assessed the research attitudes and beliefs of a racially and ethnically diverse group of persons living with HIV/AIDS, with research broadly defined as either psychosocial, behavioral, or clinical. Also assessed were factors that would encourage or discourage them from participating in a research study. Six hundred twenty-two participants were recruited from 22 points of service in New York City; data were gathered through a single in-person structured interview conducted in Spanish or English. Findings from a series of quantitative analyses indicated that attitudes about research were primarily neutral or positive, and different attitude and belief patterns were associated with different preferences regarding what would or would not incline one to participate in a research study. Results suggest that minorities with HIV/AIDS are open to the possibility participating in research; however, they also suggest that receptivity to research may not be uniform and indicated a variety of specific research design and implementation options that investigators should consider in order to ensure sufficient access and interest in participation.

Using the Interactive Systems Framework to Support a Quality Improvement Approach to Dissemination of Evidence-Based Strategies to Promote Early Detection of Breast Cancer: Planning a Comprehensive Dynamic Trial

Dissemination efforts must optimize interventions for new settings and populations. As such, dissemination research should incorporate principles of quality improvement. Comprehensive Dynamic Trial (CDT) designs examine how information gained during dissemination may be used to modify interventions and improve performance. Although CDT may offer distinct advantages over static designs, organizing the many necessary roles and activities is a significant challenge. In this article, we discuss use of the Interactive Systems Framework for Dissemination and Implementation to systematically implement a CDT. Specifically, we describe “Bronx ACCESS”, a program designed to disseminate evidence-based strategies to promote adherence to mammography guidelines. In Bronx ACCESS, the Intervention Delivery System will elicit information needed to adapt strategies to specific settings and circumstances. The Intervention Synthesis and Translation System will use this information to test changes to strategies through “embedded experiments”. The Intervention Support System will build local capacities found to be necessary for intervention institutionalization. Simulation modeling will be used to integrate findings across systems. Results will inform on-going policy debate about interventions needed to promote population-level screening. More generally, this project is intended to advance understanding of research paradigms necessary to study dissemination.

Establishing a General Medical Outpatient Clinic for Cancer Survivors in a Public City Hospital Setting

ABSTRACTINTRODUCTIONMany cancer centers and community hospitals are developing novel models of survivorship care. However, few are specifically focused on services for socio-economically disadvantaged cancer survivors.AIMSTo describe a new model of survivorship care serving culturally diverse, urban adult cancer patients and to present findings from a feasibility evaluation.SETTINGAdult cancer patients treated at a public city hospital cancer center.PROGRAM DESCRIPTIONThe clinic provides comprehensive medical and psychosocial services for patients within a public hospital cancer center where they receive their oncology care.PROGRAM EVALUATIONLongitudinal data collected over a 3-year period were used to describe patient demographics, patient needs, and services delivered. Since inception, 410 cancer patients have been served. Demand for services has grown steadily. Hypertension was the most frequent comorbid condition treated. Pain, depression, cardiovascular disease, hyperlipidemia, and bowel dysfunction were the most common post-treatment problems experienced by the patients. Financial counseling was an important patient resource.DISCUSSIONThis new clinical service has been well-integrated into its public urban hospital setting and constitutes an innovative model of health-care delivery for socio-economically challenged, culturally diverse adult cancer survivors.

Exploring Cancer Screening in the Context of Unmet Mental Health Needs: A Participatory Pilot Study

Background: Cancer is the leading cause of preventable death in the Bronx, New York. Service providers in this mental health provider shortage area identified untreated mental illness as an important barrier to participation in cancer screening, a finding that supports existing literature. The Mental Health and Cancer (MHC) Connection partnership formed to investigate and address this issue.Objectives: We sought to use an ecological framework to examine barriers and facilitators to obtaining mental health services in the Bronx, and to explore how lack of access to mental healthcare affects cancer screening.Methods: In this community-based participatory research (CBPR)-driven pilot study, semistructured, qualitative interviews based on an ecological framework were conducted with 37 Bronx-based service providers representing a range of professional perspectives. Data were analyzed using thematic content analysis and techniques from grounded theory.Results: Similar barriers and facilitators were reported for mental healthcare and cancer screening utilization across ecological levels. Providers emphasized the impact of urban poverty-related stressors on the mental health of their clients, and affirmed that mental health issues were a deterrent for cancer screening. They also recognized their own inability to connect clients effectively to cancer screening services, and rarely saw this as part of their present role.Conclusions: Findings highlight how unmet mental health needs can affect cancer screening in impoverished urban contexts. Participants recommended improving linkages across healthcare and social service providers to address mental health and cancer screening needs simultaneously. Study results are being used to plan a collaborative intervention in the Bronx through the MHC Connection partnership.

Sustaining CBPR Partnerships to Address Health Disparities in Times of Economic Instability

In unstable economic environments, CBPR partnerships in underserved communities may face unanticipated obstacles that threaten success and sustainability. This report describes challenges experienced by HealthLink, a CBPR partnership to address cancer disparities in Queens, N.Y., and how HealthLink adapted. Recommendations for designing CBPR partnerships to overcome unexpected challenges are provided.

Readiness and Capacity of Librarians in Public Libraries to Implement a Breast Cancer Outreach and Screening Campaign in Medically Underserved Communities

Community-based partnerships are an important means of addressing cancer health disparities in medically underserved communities. Public libraries may be ideal partners in this effort. To assess the readiness and capacity of a public library system to implement cancer recruitment and outreach campaigns, 58 librarians in the Queens Borough Public Library System in New York completed self-administered questionnaires before and after a training on breast health, cancer, and screening. Results indicate that they are interested in participating in a cancer outreach campaign and feel it is a critical need in their community. Many librarians lacked the knowledge about cancer and cancer information resources needed to participate optimally. Nevertheless, librarians provide a cultural bridge to medically underserved communities. Partnering with a public library system to improve access to care has great potential, yet a number of challenges need to be overcome.

Impact of primary care provider knowledge, attitudes, and beliefs about cancer clinical trials: implications for referral, education and advocacy.

Primary Care Providers (PCPs) can be instrumental in helping to prepare patients for referral to cancer treatment. It has been suggested that PCPs can have an important impact on priming patients about the possibility of receiving care within a cancer treatment clinical trial (CCT). However, little is understood about how to effectively engage primary care providers in educating patients about trials. Data were collected as part of two qualitative research projects about primary care providers’ role in referral to treatment and to CCTs. Participants were 27 PCPs who agreed to take part in qualitative face-to-face or telephone interviews and serve predominantly underserved, minority populations. Interviews identified a number of factors influencing referral to oncologists, including patients’ insurance coverage, location and proximity to treatment facilities, and the strength of ongoing relationships with and/or previous experience with a specialist. PCPs overwhelmingly expressed disinterest in discussing any treatment options, including CCTs. Misconceptions about quality of care received through trials were also common, presenting a deterrent to discussion. PCPs need targeted, evidence-based educational interventions to appropriately address their concerns about cancer clinical trials, enhance provider communication skills, and alter patient referral behavior. Steps must also be taken to strengthen communication between oncologists and referring PCPs.