Cancer Disparities Research Partnership Research Articles

The National Cancer Institute's Cancer Disparities Research Partnership Program: a unique funding model 20 years later.

The burden of cancer and access to effective treatment are not experienced equally by all in the United States. For underserved populations that often access the health-care system when their cancers are in advanced disease stages, radiation oncology services are essential. In 2001, the National Cancer Institute's (NCI's) Radiation Research Program created and implemented the Cancer Disparities Research Partnership Program (CDRP). CDRP was a pioneering funding model whose goal was to increase participation of medically underserved populations in NCI clinical trials. CDRP's Cooperative Agreement funding supported for awardees the planning, development, and conduct of radiation oncology clinical research in institutions not traditionally involved in NCI-sponsored research and cared for a disproportionate number of medically underserved, health-disparities populations. The awardee secured and provided support for mentorship from 1 of 2 NCI comprehensive cancer centers named in its application. Six CDRP awards were made over two 5-year funding periods ending in 2013, with the end-of-program accomplishments previously reported. With the current focus on addressing equity, diversity, and inclusion, the 6 principal investigators were surveyed, 5 of whom responded about the impact of CDRP on their institutions, communities, and personal career paths. The survey that was emailed included 10 questions on a 5-point Likert scale. It was not possible to collect patient data this long after completion of the program. This article provides a 20-year retrospective of the experiences and observations from those principal investigators that can inform those now planning, building, and implementing equity, diversity, and inclusion programs.

An innovative educational program for addressing health disparities in translational cancer research.

North Carolina Central University (NCCU) and Duke Cancer Institute implemented an NCI-funded Translational Cancer Disparities Research Partnership to enhance translational cancer research, increase the pool of underrepresented racial and ethnic group (UREG) researchers in the translational and clinical research workforce, and equip UREG trainees with skills to increase diversity in clinical trials. The Cancer Research Education Program (C-REP) provided training for UREG graduate students and postdoctoral fellows at Duke and NCCU. An innovative component of C-REP is the Translational Immersion Experience (TIE), which enabled Scholars to gain knowledge across eight domains of clinical and translational research (clinical trials operations, data monitoring, regulatory affairs, UREG accrual, biobanking, community engagement, community outreach, and high-throughput drug screening). Program-specific evaluative metrics were created for three broad domains (clinical operations, basic science/lab research, and population-based science) and eight TIE domains. Two cohorts (n = 13) completed pre- and post-surveys to determine program impact and identify recommendations for program improvement. Scholars reported statistically significant gains in knowledge across three broad domains of biomedical research and seven distinct areas within TIE. Training in translational research incorporating immersions in clinical trials operation, biobanking, drug development, and community engagement adds value to career development of UREG researchers.

Abstract IA11: Understanding the complex factors that contribute to the persistence of disparities among American Indian/Alaska Native populations: The Walking Forward experience

Abstract Purpose/Objective(s): American Indians (AIs) present with more advanced stages of cancer and, therefore, suffer from higher cancer mortality rates compared to non-AIs. Under the National Cancer Institute Cancer Disparities Research Partnership Program (CDRP), we have been researching methods of improving cancer treatment and outcomes since 2002, for AIs in Western South Dakota, through the Walking Forward (WF) Program. Materials/Methods: This program consists of 1) a culturally-tailored patient navigation program that facilitated access to innovative clinical trials in conjunction with a comprehensive educational program encouraging screening and early detection, b) surveys to evaluate barriers to access, c) clinical trials focusing on reducing treatment length as AIs live a median of 140 miles from the cancer center, d) a molecular study (ATM - Ataxia telangectasia mutation) to address whether there is a molecular profile that increases toxicity risks, and e) recently funded projects using mHealth (mobile) technology to address smoking cessation in the general population and cancer survivors, as well as a survivorship program to increase physical activity. A breast patient navigation (BPN) program was developed for all patients in 2007 to address the high mastectomy rates in our area. An analysis of this program was undertaken to determine if the breast conservation rates (BC) have improved over time: 849 non-navigated patients from 2000-2006 were compared to 617 navigated patients from 2007-2012. Results: To date, over 3,800 AIs have participated in various WF research studies. Critical outcomes include the establishment of trust within tribal communities, identification of barriers to cancer screening, creation of research infrastructure, higher completion rates and patient satisfaction for patients undergoing cancer treatment, enrollment of patients on Phase II trials with excellent clinical outcomes, and the establishment of new research partners. The BC rates have improved from 37% to 56% over time. To date, 158 AIs have been enrolled in our smoking cessation study with an anticipated accrual of 256. Recent analysis suggests that AI cancer patients with screen-detectable cancers are now presenting with earlier stages of disease and higher cure rates. Conclusions: This NCI funded pilot program has achieved some initial measures of success. A research infrastructure has been created in a community setting to address new research questions and interventions. One critical objective of the CDRP program was to create sustainable, community research programs that has been achieved at our site and is ongoing with new grants and a new partnership with the Avera Health in Sioux Falls, SD, where a genomics program will be implemented. Lessons learned will also be presented. This study was funded by NIH grant 5 U56 CA099010. Contributors: Sheikh Iqbal Ahamed2, Amy Boylan1, Simone Bordeaux1, Linda Burhansstipanov3, Kristin Cina1, Kim Crawford1, Mark Dignan6, Ashleigh Guadagnolo5, Linda Krebs3, Patricia Kussman1, Adam Omidpanah4, Daniel Petereit1, Michele Sargent1, Mary Stein1, Doris Thibeault1. 1Rapid City Regional Hospital, Rapid City, SD; 2Marquette University, Milwaukee, WI; 3Native American Cancer Research Corporation, Pine, CO; 4University of Washington, Seattle, WA; 5The University of Texas MD Anderson Cancer Center, Houston, TX; 6University of Kentucky, Lexington, KY. Citation Format: Daniel G. Petereit. Understanding the complex factors that contribute to the persistence of disparities among American Indian/Alaska Native populations: The Walking Forward experience. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr IA11.

National Cancer Institute's Cancer Disparities Research Partnership Program: Experience and Lessons Learned.

Purpose: To increase access of underserved/health disparities communities to National Cancer Institute (NCI) clinical trials, the Radiation Research Program piloted a unique model – the Cancer Disparities Research Partnership (CDRP) program. CDRP targeted community hospitals with a limited past NCI funding history and provided funding to establish the infrastructure for their clinical research program.Methods: Initially, 5-year planning phase funding was awarded to six CDRP institutions through a cooperative agreement (U56). Five were subsequently eligible to compete for 5-year implementation phase (U54) funding and three received a second award. Additionally, the NCI Center to Reduce Cancer Health Disparities supported their U56 patient navigation programs.Results: Community-based hospitals with little or no clinical trials experience required at least a year to develop the infrastructure and establish community outreach/education and patient navigation programs before accrual to clinical trials could begin. Once established, CDRP sites increased their yearly patient accrual mainly to NCI-sponsored cooperative group trials (~60%) and Principal Investigator/mentor-initiated trials (~30%). The total number of patients accrued on all types of trials was 2,371, while 5,147 patients received navigation services.Conclusion: Despite a historical gap in participation in clinical cancer research, underserved communities are willing/eager to participate. Since a limited number of cooperative group trials address locally advanced diseases seen in health disparities populations; this shortcoming needs to be rectified. Sustainability for these programs remains a challenge. Addressing these gaps through research and public health mechanisms may have an important impact on their health, scientific progress, and efforts to increase diversity in NCI clinical trials.

Abstract A72: Models of patient navigation programs: Experience from the Cancer Disparities Research Partnership (CDRP) grantees

Abstract Purpose: To report the different models of patient navigation programs utilized and the experiences of the Cancer Disparities Research Partnership (CDRP) program. Background: The CDRP Program was developed to address U.S. cancer health disparities among minority/underserved populations by increasing participation in cancer clinical trials and one of the main components was the development of a PN program at each site, which addressed the specific needs of its disparity populations. Methods: The 6 different CDRP sites across the country implemented different models for a patient navigation program, including a lay navigator model, a professional model, and a combination of both. Centinela Freeman Hospital used a lay navigator model consisting of locally trained community lay health workers as navigators. Four sites (Laredo Medical Center, New Hanover Regional Medical Center, Singing River Health System and UPMC McKeesport Hospital) used a professional approach with navigators who were either registered nurses and/or social workers. Rapid City Regional Hospital used a combination and novel approach by combining both community members and health professionals. The community navigators served as a liaison between the health professionals and the community. Results: Within these 3 models of patient navigation, a total of 3,480 cancer patients were navigated (65% were Non-Hispanic Whites, while only 35% were ethnic minorities). A total of 1,644 patients enrolled in clinical trials and only 264 (16%) patients had been navigated, but the majority of these navigated patients participating in clinical trials were racial/ethnic minorities (58% were American Indian, black/African American, and Hispanic/Latino). Most grantees felt that patient navigation improved the overall cancer care experience for patients, by increasing the likelihood that patients would successfully complete treatment, improving patient's understanding of their disease, establishing rapport between patients and their healthcare providers, and also guiding patients to choose between various cancer treatment options (including clinical trials). The patient navigators built trust in the community, and in certain situations, such as in the Native American population, the navigators were able to address the concerns of tribal health councils to help endorse clinical trials and encourage enrollment. Although the specific duties of the navigators differed across sites, the primary role of the navigators remained the same - to help guide patients through the cancer screening and treatment process, assist patients in overcoming various barriers to care, and facilitate participation in clinical trials. Conclusions: There are various models of the patient navigation program which is one strategy used to address cancer disparities, and the type of model that works best is dependent on the patient population being served, specific goals of the program, the existing infrastructure of the hospital, and sources of funding available. A successful patient navigation program may improve access and accrual of racial/ethnic minority patients into cancer clinical trials. Citation Format: Melissa K. Yee, Rosemary Wong, Dwight E. Heron. Models of patient navigation programs: Experience from the Cancer Disparities Research Partnership (CDRP) grantees. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A72. doi:10.1158/1538-7755.DISP13-A72

Abstract PL02-02: Lessons learned from the Walking Forward Program in recruiting American Indians on clinical trials

Abstract Purpose/Objective(s): American Indians (AIs) present with more advanced stages of cancer and, therefore, suffer from higher cancer mortality rates compared to non-AIs. Under the National Cancer Institute Cancer Disparities Research Partnership Program (CDRP), we have been researching methods of improving cancer treatment and outcomes since 2002, for AIs in Western South Dakota, through the Walking Forward (WF) Program. Materials/Methods: This program consists of a) a culturally-tailored patient navigation program that facilitated access to innovative clinical trials in conjunction with a comprehensive educational program encouraging screening and early detection, b) surveys to evaluate barriers to access, c) clinical trials focusing on reducing treatment length as AIs live a median of 140 miles from the cancer center, d) a molecular study (ATM - Ataxia telangectasia mutation) to address whether there is a molecular profile that increases toxicity risks, and e) a recently funded project using mHealth (mobile) technology to address the high smoking rates in this population. Results: To date, over 3,700 AIs have participated in various WF research studies. Critical outcomes include the establishment of trust within tribal communities, identification of barriers to cancer screening, creation of research infrastructure, higher completion rates and patient satisfaction for patients undergoing cancer treatment, enrollment of patients on phase II trials with excellent clinical outcomes, and the establishment of new research partners. Recent analysis suggests that AI cancer patients with screen detectable cancers are now presenting with earlier stages of disease and higher cure rates. Lessons learned will also be presented. Conclusions: This NCI funded pilot program has achieved some initial measures of success. A research infrastructure has been created in a community setting to address new research questions and interventions. One critical objective of the CDRP program was to create sustainable, community research programs that has been achieved at our site. Citation Format: Daniel G. Petereit, Shalini Kanekar, Ashleigh Guadagnolo, Amy Boylan, Kristin Cina, Linda Burhansstipanov. Lessons learned from the Walking Forward Program in recruiting American Indians on clinical trials. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr PL02-02. doi:10.1158/1538-7755.DISP13-PL02-02

Visualization of the Left Anterior Descending Coronary Artery on Computed Tomographic Images Used for the Planning of Breast Radiation Treatments

initiation of RT including: mastitis, delayed wound healing, lymphangitis, and symptomatic arm lymphedema (4 of 20 patients who underwent axillary nodal dissection). Six patients (8%) developed RT toxicities, all of which were skin-related (five grade 2 and one grade 3; RTOG scale). Physician rating of cosmesis at 1-3 months post-RTwas: 3% excellent, 94% good, and 4% fair. Cosmesiswas rated as excellent or good by 92%of patients PRE-RT, 88%POST-RT, and 78% at 6MO. Treatment satisfaction was rated as “total” or “somewhat” by 96% of patients PRE-RT, 92% POST-RT, and 78% at 6MO.No significant relationwas found between patient or treatment-related factors and RT toxicity. At a median follow-up of 9 months, no patient has developed local or regional recurrence. Conclusions: Oncoplastic surgery followed by standard whole breast RT yielded an acceptable toxicity profile and favorable physician-rated cosmesis in this large community series. Patients’ ratings of cosmesis and treatment satisfaction were high, decreasing slightly at 6 months after RT. Long-term oncologic and cosmetic outcomes await further follow-up. A phase II trial is underway evaluating cosmesis with hypofractionated RT in this setting. Author Disclosure: P.D. Maguire: E. Research Grant; Cancer Disparities Research Partnership (CDRP) Grant from National Cancer Institute, “Improving Cancer Outcomes for the Underserved in North Carolina”. A. Adams: None. G. Bebb: None. C. Kays: None. M. Nichols: None.

Addressing Cancer Disparities Among American Indians through Innovative Technologies and Patient Navigation: The Walking Forward Experience

Purpose/Objective(s): American Indians (AIs) present with more advanced stages of cancer and, therefore, suffer from higher cancer mortality rates compared to non-AIs. Under the National Cancer Institute (NCI) Cancer Disparities Research Partnership (CDRP) Program, we have been researching methods of improving cancer treatment and outcomes since 2002, for AIs in Western South Dakota, through the Walking Forward (WF) Program. Materials/Methods: This program consists of (a) a culturally tailored patient navigation program that facilitated access to innovative clinical trials in conjunction with a comprehensive educational program encouraging screening and early detection, (b), surveys to evaluate barriers to access, (c) clinical trials focusing on reducing treatment length to facilitate enhanced participation using brachytherapy and intensity modulated radiotherapy (IMRT) for breast and prostate cancer, as AIs live a median of 140 miles from the cancer center, and (d) a molecular study (ataxia telangiectasia mutated) to address whether there is a specific profile that increases toxicity risks. Results: We describe the design and implementation of this program, summary of previously published results, and ongoing research to influence stage at presentation. Some of the critical outcomes include the successful implementation of a community-based research program, development of trust within tribal communities, identification of barriers, analysis of nearly 400 navigated cancer patients, clinical trial accrual rate of 10%, and total enrollment of nearly 2,500 AIs on WF research studies. Conclusion: This NCI funded pilot program has achieved some initial measures of success. A research infrastructure has been created in a community setting to address new research questions and interventions. Efforts underway to promote cancer education and screening are presented, as well as applications of the lessons learned to other health disparity populations – both nationally and internationally.

Creation of Community-Based Research Capabilities in the Neighborhood Cancer Care Cooperative: Administrative Infrastructure, Program Initiatives, and Evaluation Priorities

The Radiation Oncology Community Outreach Group (ROCOG) and the Neighborhood Cancer Care Cooperative (NCCC) were developed to address oncology-related health disparities utilizing a community-based, collaborative organizational design. Funded in 2003 by the National Cancer Institute's Cancer Disparities Research Partnership program, ROCOG/NCCC has focused on reducing barriers to care and enhancing the health care system's responsiveness to minority and indigent populations within Southwestern Pennsylvania. This article will describe the component programs that have been developed under this umbrella, as well as the evolved administrative, governance, and evaluation infrastructure that supports these initiatives.

Use of Partnership Strategies to Build Radiation Oncology Disparities Research Programs in Five Western Pennsylvania Communities: An Organizational Case Study

Many cancer treatment and prevention trials as well as surveillance programs suffer from a disproportionately low rate of accrual and a high rate of noncompliance or dropouts of racial minorities and the poor. One suggested strategy to help remediate this trend is to directly involve those targeted populations within the development, implementation, and evaluation of these services. The Radiation Oncology Community Outreach Group (ROCOG) and Neighborhood Cancer Care Cooperative (NCCC) are designed based upon this type of highly collaborative organizational structure, consistent with the general principles of community-based participatory research. Funded by the National Cancer Institute Cancer Disparities Research Partnership program, ROCOG/NCCC provide oncology-focused, community hospital–based initiatives intended to help close the cancer disparities gap. This article presents a descriptive case study of the organizational and political process that preceded our grant proposal submission, the potential benefits and difficulties associated with our extensive collaborative model, and an example of how highly competitive health care organizations can become partners in narrowly focused initiatives aimed at a greater social good.

Evaluation of Formative Development in the Neighborhood Cancer Care Cooperative

The Radiation Oncology Community Outreach Group (ROCOG) and Neighborhood Cancer Care Cooperative (NCCC) were funded by the National Cancer Institute Radiation Research Program Cancer Disparities Research Partnership program in September 2003. ROCOG/NCCC provides customized, community hospital–based initiatives intended to help close the cancer disparities gap. In our two preceding articles in this issue, we have explored contextual and organizational development, described infrastructure and component programs, and outlined early evaluation strategies. This article will conclude the series of publications describing our early development by evaluating the formative implementation phase of the project. Our first 12 months were initially evaluated through a survey designed to assess staff and key stakeholders' perception of progress. An assessment of the level of completion of key project tasks was conducted 6 months after the survey. This combination has allowed ROCOG/NCCC to determine areas of success and also illustrate those in need of improvement. Our evaluation strategy can also serve as an efficient and inexpensive model for other similar community-based start-up programs to replicate.

Cancer Disparities Research Partnership in Lakota Country: Clinical Trials, Patient Services, and Community Education for the Oglala, Rosebud, and Cheyenne River Sioux Tribes

Native Americans served by the Aberdeen, Billings, and Bemidji areas of the Indian Health Service (IHS) have a cancer mortality rate approximately 40% higher than that of the overall US population. The National Cancer Institute has funded Rapid City Regional Hospital to provide clinical trials, behavioral research, a genetic protocol, patient navigator services (assisting patients with health care coordination and financial issues and helping them to understand their options), and community education for members of 3 western South Dakota tribes. Challenges faced by the project included obtaining multiple approvals from 3 tribes, 4 IHS facilities, and 5 institutional review boards; travel distances; lack of screening; red tape of referrals; and refusal by some payers to cover clinical trials. Building trust through ongoing communication and community presence is key to a successful project.

Barriers Faced by Mexican American Patients During Radiation Therapy: Preliminary Results of the Laredo Navigator Project of the NCI U56 Cancer Disparities Research Partnership Program

Barriers Faced by Mexican American Patients During Radiation Therapy: Preliminary Results of the Laredo Navigator Project of the NCI U56 Cancer Disparities Research Partnership Program

Walking Forward: The South Dakota Native American Project

The "Walking Forward" program is a scientific collaborative program between Rapid City Regional Hospital, the University of Wisconsin, the Mayo Clinic, and partnerships with the American Indian community in western South Dakota-3 reservations and 1 urban population. The purpose is to increase participation of health disparities populations on National Cancer Institute clinical trials as part of the Cancer Disparities Research Partnership program. Clinical practice suggests that Native American cancer patients present with more advanced stages of cancer and hence have lower cure rates and higher treatment-related morbidities. It is hypothesized that a conventional course of cancer treatment lasting 6 to 8 weeks may be a barrier. Innovative clinical trials have been developed to shorten the course of treatment. A molecular predisposition to treatment side effects is also explored. These clinical endeavors will be performed in conjunction with a patient navigator research program. Research metrics include analysis of process, clinical trials participation, treatment outcome, and assessment of access to cancer care at an early stage of disease.

Cooperative Planning Grant for Cancer Disparities Research Partnership Program: RFA CA-03-018

Cooperative Planning Grant for Cancer Disparities Research Partnership Program: RFA CA-03-018

COOPERATIVE PLANNING GRANT FOR CANCER DISPARITIES RESEARCH PARTNERSHIP:RFA-CA-02-002

COOPERATIVE PLANNING GRANT FOR CANCER DISPARITIES RESEARCH PARTNERSHIP:RFA-CA-02-002