Rachel Ballard-Barbash, MD, MPH, Associate Director, Applied Research Program
Evaluating progress in individual, social, and system-level factors that influence cancer outcomes is critical to developing a well targeted cancer control program. Because people do not act in isolation from society, systems, and their environment, we seek to improve data resources and methods for evaluating these factors—from food and tobacco supply to health care. While many health surveillance systems collect detailed information at the individual level, it has been a greater challenge to obtain information on social and systemlevel factors that may influence dissemination and adoption of cancer control practices. Advances from geographic information systems are being used to link individual with ecological data to explore how such contextual measures influence individuals. Results from research supported by the Applied Research Program (ARP) have improved our ability to identify factors underlying our measures of cancer burden, make critical scientific and public health policy decisions, develop and monitor prevention and control measures, and assess whether interventions at the local or national level are making a difference.
ARP has made tremendous progress in developing monitoring systems, advancing methods, expanding health services and outcomes research, disseminating research resources electronically, and advancing their utility for research.
Collaborative and coordination efforts with many public and private partners have made these accomplishments possible.
In prevention and screening, we have augmented data on risk and family history, and on health behaviors such as tobacco use, diet and physical activity, screening, sun avoidance, use of common medications related to cancer outcomes, and use of genetic testing. Expanded data collection in areas covered by high quality cancer registration has improved the potential for interpretation of factors underlying the cancer burden. NCI contributed to tracking progress in achieving the Healthy People 2010 cancer control objectives through research utilizing these resources. In addition to population-level health monitoring, we have examined the adoption of new advances in cancer risk assessment and screening through physician surveys. Through direct linkage of individual-level screening data to cancer outcomes, we are providing national measures of mammography performance, and we are exploring the potential to develop similar measures for colorectal cancer screening as well as supporting research to identify measures relevant to cancer treatment.
NCI has made major advances in supporting research on the development of data systems and methods for tracking evidence-based measures of quality cancer care. The SEER-Medicare linked data, a national research resource for quality and cost-of-care research, has led to over 200 publications.
Through the collection of detailed data on treatment within physicians’ offices in areas covered by SEER registries, NCI supports research examining patterns and trends in care for major cancers. NCI also has supported research in cohorts of cancer patients (prostate, breast, colon, and lung cancers) that will provide much-needed information across the clinical course, from diagnosis through treatment and long term survival.
In addition to improving data resources, ARP is supporting efforts to improve research methods to ensure that measures used for research, evaluation, and monitoring of progress are accurate and valid over time. To improve self-reported measures commonly collected, we have supported methodological research that incorporates objective biologic or physical measures of exposures to quantify measurement error from self-report of key health behaviors, such as diet and physical activity. The use of cognitive testing and psychometric methods are improving self-reported measures in other critical areas, such as quality of life and symptom management. Finally, we are exploring the potential for enhancing information systems for real-time data collection, integration of information across diverse elements, and feedback—critical elements to the development of rapid evaluation and feedback from population monitoring to public health and clinical practice.
Ensuring the rapid translation of evidence-based care into practice is a national priority. In addition to publication of ARP research findings and presentations at meetings, rapid distribution of information and resources through NCI’s public Web pages has helped increase the timely transfer of research into practice. ARP is also engaged in many collaborative translation efforts with partners involved in the delivery of care. For example, pilot projects with federal health care delivery organizations, such as the Cancer Collaborative with Community Health Centers, are increasing the delivery of evidence-based screening and follow-up diagnostic evaluation of major cancers. In a joint NCI Breast Cancer Surveillance Consortium and American College of Radiology project, we have developed streamlined and standardized data collection instruments and software systems for evaluating mammography across the United States. The program was awarded funding under the Breast Cancer Stamp Act for a joint American Cancer Society/NCI project that examines approaches to improving interpretive performance of mammographers. NCI also works with the National Quality Forum, a public-private partnership created to foster voluntary consensus standards on the quality of health care, including measures for cancer treatment, survivorship, and palliative care. These initiatives seek to improve the delivery of cancer control through ensuring the adoption of evidence-based interventions within public health and clinical practice.