In 2008, the National Institutes of Health (NIH) and the Cancer Research Network (CRN)—a consortium of 14 nonprofit research centers based in integrated health care delivery organizations—non-CRN cancer researchers, and patient advocates participated in a concept-mapping process to identify scientific priorities for the CRN. The following eight CRN priority research themes emerged from this exercise.
Data Resources and Infrastructure
CRN member organizations have electronic medical record systems, patient websites, and rich arrays of current and historic electronic data on enrollee populations. The continued improvement of the CRN standardized data infrastructure is a priority, as is the development and testing of research, surveillance, and medical practice innovations built upon electronic medical records, patient web portals, computer-based physician order entry systems, and automated records of complete health service utilization.
Enhancing Cancer Communication and Decision-making
With its extensive data on patients and providers, a key CRN strength is the capacity to examine and optimize the quality of patient communication and decision-making about cancer screening, diagnosis, treatment, and survivorship in diverse populations. CRN studies in this area examine a wide range of issues—from shared clinical decision-making to web-based consumer information.
Health Care Delivery, Quality, Costs, and Outcomes
Examining the influence of alternative health care processes on quality, cost, and outcomes is a key foundation of managed care research centers. Studies in this area address the nature and quality of cancer prevention services, screening, treatment, supportive care, and survivorship care, and their impact on health outcomes and costs. The relatively large number of clinical sites and the size and diversity of CRN patient populations facilitate studies of practice variation, disparities in care and outcomes, and intervention studies.
Health Insurance Benefit Design and Patterns of Care Utilization
Improvements in care and benefit structure can be advanced with research that examines the relationship between patients’ benefit design, in the form of cost sharing or out-of-pocket costs for medical services (e.g., co-payments, co-insurance, and deductible rates) and their use of cancer screening and treatment services. Patients who have higher cost sharing for medical services typically are less likely to use recommended medical care services. Moreover, cost sharing has disproportionate effects on low-income populations.
Cancer Epidemiology, Prevention, and Health Promotion
The CRN provides large and diverse populations for conducting cross-sectional, case-control, cohort, and intervention studies to examine numerous cancerrelated conditions, including health disparities and rare outcomes. Studies of health promotion strategies, lifestyle change, and risk factor assessment and identification benefit from the HMO setting. This setting enhances the ability to define populations to facilitate recruitment and follow-up, work with the health care system to enhance retention of study participants, and have available detailed information on medical care covariates and comorbid conditions that may affect research outcomes.
Psychosocial Factors and Burden of Cancer
Factors such as education, financial assets, literacy, psychosocial distress, and cost of treatment affect cancer care, patient outcomes such as quality of life, and the patients’ care experience. This research theme emphasizes studies that will better characterize these effects and identify interventions to ameliorate them. Examining disparities in cancer access, outcomes, and treatment, and the effectiveness of psychosocial interventions for patients with cancer, are priority research areas.
Research Translation and Patterns of Screening, Treatment, and Care
The CRN’s population size, diversity, and data resources provide rich opportunities to study cancer prevention and care in different care settings, patient populations, and regions of the country over time. Of particular interest are studies of the introduction and diffusion of new diagnostic and treatment modalities into practice, and the conduct of pharmaco-epidemiologic and pharmaco-genomic studies of the effectiveness of cancer drugs.
Building Capacity to Support Emerging Areas of Cancer Control Research
CRN investigators and health care organizations have tremendous potential to advance research activities to develop, enhance, and test health informatics, database, and biospecimen tools and resources. These activities would support research in areas such as cancer risk assessment and modeling; studies of behavioral, environmental, and genetic factors; and personalized health care approaches to preventive care, screening, diagnosis/prognosis, and treatment. In addition, the CRN aims to develop activities to increase the timeliness, efficiency, and effectiveness of recruitment to phase II and phase III prevention and treatment trials.
The National Cancer Institute’s (NCI) CRN provide care to nearly 11 million individuals. To achieve its scientific goals, the CRN collaborates with CRN investigators and with investigators and research institutions outside of the CRN member organizations. The CRN is funded through an NCI cooperative agreement, which ensures substantive NCI involvement in attaining research goals and catalyzing new collaborations. The Agency for Healthcare Research and Quality (AHRQ) also supports the CRN. In addition, CRN research focuses on the characteristics of patients, clinicians, communities, and health systems that lead to the best possible outcomes in cancer prevention and care. The CRN also develops and uses standardized approaches to data collection, data management, and analysis across health systems.
With 14 research centers based in integrated health care delivery organizations nationwide, the CRN is heavily influenced by its proximity to and familiarity with the day-to-day provision of cancer care. All CRN sites are longstanding organizations with a stable presence in their communities. They also have research centers and investigators who understand their enrollee populations, the organization and delivery of care, and the associated data systems.
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http://crn.cancer.gov for more information and to learn about collaborating with the CRN.
