Ann M. Geiger, MPH, PhD; Ashley W. Smith, PhD, MPH; Sarah C. Kobrin, PhD, MPH; and Stephen H. Taplin, MD
President Obama's announcement of the cancer moonshot, including the recent release of the Blue Ribbon Panel Report1
identifying potential research priorities, highlights that now is a time of great hope for cancer care.2
Efforts to promote tobacco cessation and human papillomavirus (HPV) vaccination exemplify clinical opportunities to prevent cancer. Developments in cancer screening, specifically the fecal immunochemical test and low-dose computed tomography of the lung, increase the chances of early detection and treatment of cancer. Advances in understanding the drivers of tumor growth and the immune response to tumor cells have resulted in entirely new classes of drugs. Improvements in the measurement and management of cancer- and treatment-related symptoms offer opportunities to improve patients’ and survivors’ health-related quality of life. The Cancer Moonshot goal of accomplishing in 5 years what would otherwise take 10 will, hopefully, accelerate scientific progress.
Realizing the full public health impact of these advances will require their routine implementation in healthcare delivery. Cancer care spans prevention and screening, diagnosis and acute treatment, and long-term follow-up and end-of life care. The clinicians providing care may, at various points, include physicians, advanced practice nurses, physician assistants, and others. These clinicians may be trained in primary care, surgery, medical oncology, radiation oncology, nursing, palliative care, psychology, or other disciplines. However, substantial variability exists in efforts to achieve patient engagement and coordinate care. The lack of electronic health record interoperability makes it difficult to ensure accurate and timely communication among clinicians and between clinicians and patients. New models, like patient-centered medical homes and accountable care organizations, are altering the practice context. In addition, financial pressures are mounting, in the form of out-of-pocket costs for patients and shifts from fee-for-service to bundled reimbursement for clinicians. A National Academy of Medicine panel recently summarized these challenges by describing cancer care as a “system in crisis.”3
Historically, the National Cancer Institute (NCI) has been the predominant funder of bench, clinical, and population-based cancer research in the United States. The NCI also supports research resources, such as national networks, to collect data on cancer patients and to conduct clinical trials in both academic and community settings. Nearly 70 NCI-designated and -funded cancer centers provide additional research infrastructure. The Division of Cancer Control and Population Sciences facilitates behavioral, epidemiologic, and other types of research intended to decrease cancer incidence, increase cancer survival, and improve the well-being of cancer patients, survivors, caregivers, and the community. The purpose of this manuscript is to outline recent Division efforts to enhance research on the delivery of cancer care.
FORMATION OF THE HEALTHCARE DELIVERY RESEARCH PROGRAM
The need for empirical evidence to address cancer care challenges has been increasingly apparent to leadership and staff of the NCI’s Division of Cancer Control and Population Sciences. In 2014, leadership began discussing the possibility of centralizing relevant Division efforts in order to facilitate the development of new initiatives and increase the internal and external visibility of this important area.
As a result of these discussions, the Healthcare Delivery Research Program was created in January 2015.
The phrase “healthcare delivery research” was intended to describe all efforts aimed at creating generalizable knowledge about approaches to improving cancer care in both oncology and nononcology settings. Healthcare delivery research was also intended to incorporate scientific contributions from traditional health services researchers and scientists whose primary work in other fields may be applicable to cancer care. Staff defined the vision of the program as “optimal health outcomes for individual, families, and communities affected by cancer.” This vision statement highlights healthcare delivery research, not as an end, but as a means to achieve the ultimate outcome of improved health for individuals and populations. The stated mission of advancing innovative research to improve the delivery of cancer-related care emphasizes the need to develop new strategies to address emerging challenges.
The mission of the Healthcare Delivery Research Program is carried out by 3 subgroups known as Branches (FIGURE
). The primary mission of the Outcomes Research Branch is to evaluate and improve patient experiences and health outcomes, with particular attention to symptom and function measurement and management. The Health Systems and Interventions Branch observes and intervenes on contextual factors that influence care delivery, such as the function of healthcare teams and use of health information technology. The Healthcare Assessment Research Branch focuses on population-level questions related to access, utilization, diffusion, and outcomes. The following subsections describe these branches and their activities in more detail.
Outcomes Research Branch
The Outcomes Research Branch funds research that seeks to understand the health of cancer patients and survivors, and their caregivers and family members, with the ultimate goal of improving patient and survivor health and well-being. Of key interest is research that focuses on patient-reported outcomes such as anxiety, physical function, and social well-being; cancer-related symptoms such as pain and fatigue; and patient-generated health data—such as information collected through mobile devices or sensors of an individual’s physical state. Another priority is the evaluation and delivery of quality cancer care, particularly patient-centeredness and patient engagement, including satisfaction and experiences with medical care.
The Outcomes Research Branch also focuses on the development and implementation of outcomes measures for research and clinical use, as well the creation of novel data resources for research use. Work relevant to outcomes measures includes coordinating an initiative to integrate and make publicly available National Institutes of Health-funded measures designed to capture patient-centered assessments of health, function, life satisfaction, and other factors.4
This branch also facilitated the development of a measurement system designed to examine patient-reported adverse events in oncology clinical trials that supplements standard reporting by clinicians.5
Other key initiatives include the first publicly available linkage of cancer registry and health-related quality of life data.6
A second resource linking cancer registry and quality of care data is anticipated to be available later this year. In addition to informing research, work supported by the Outcomes Research Branch has the potential to inform drug approval processes and quality metrics.
Health Systems and Interventions Research Branch
The Health Systems and Interventions Research Branch funds a growing portfolio of research that seeks to understand how processes and outcomes of care are influenced by multilevel contextual factors related to clinicians, practice settings, delivery systems, insurance, and policy. A majority of currently funded studies focus on identifying nonpatient factors that include clinician behavior and organizational structure, which can be targets of interventions aimed at improving care. Expanding support for the development and evaluation of interventions targeting those factors—including improving measurement of organizational characteristics—is a strong interest. For example, this branch encourages shared decision-making research that addresses clinician and organizational structures rather than focusing solely on the patient. Similarly, the branch is interested in how the structure and function of health care teams influence care delivery, particularly when there is a transition from primary to oncology care or between oncology specialties. Research seeking to use health information technology to improve healthcare delivery is an area of growing emphasis.
Members of the Health Systems and Research Branch are engaged in a number of efforts to facilitate research on contextual factors in healthcare. For example, the branch developed a partnership with the American Society of Clinical Oncology to improve healthcare team functioning, which has included a workshop and a series of forthcoming manuscripts that will provide a foundation for future research.7
The branch provides ongoing leadership for an innovative initiative to provide NCI-designated cancer centers, with funding to support community-based work improving HPV vaccination rates.8
Similarly, the branch partners with a network of outside investigators to identify and address problems in the follow-up of abnormal screening tests.9
Finally, the branch is working collaboratively with other NCI colleagues to expand implantation science in such areas as shared decision making.10,11
Healthcare Assessment Research Branch
The Healthcare Assessment Research Branch supports research focused on demographic, social, economic, and health-system factors as they relate to access to, and provision of, cancer care at the population level rather than the individual level. Of particular interest is research on patterns of care, outcomes of healthcare services, and healthcare disparities. The branch also supports research examining the financial burden of cancer care on cancer patients, survivors, caregivers, and families, including direct (eg, co-pays and indebtedness) and indirect (eg, employment and time) costs. Policy research, such as that into reimbursement strategies and behavioral economics, is of interest as it relates to patient outcomes. Studies supported by this branch often involve population-based data linkages or research networks that are a source of information on patients, clinicians, practice settings, and insurance coverage.
The Healthcare Assessment Research Branch manages several research resources that facilitate the work of external scientists or reporting on national cancer control trends. A data linkage of national cancer registry and Medicare claims data has been widely used to explore cancer etiology, treatment patterns, and survivorship issues.12
Similarly, the addition of cancer-relevant questions to a national survey of individual spending on healthcare has provided insights into the financial burden of cancer.13
The branch also works with other federal partners to coordinate the cancer portion of a national survey of individual health that is used to monitor prevention behaviors, screening rates, and other aspects of cancer control.14
Finally, the branch conducts patterns-of-care studies designed to assess the diffusion of, and possible disparities in, the use of new therapies.15
Staff across the Healthcare Delivery Research Program are engaged in several efforts to expand cancer care delivery. Funding opportunities have been developed to encourage work in emerging areas such as caregiving,16
and system strategies to promote HPV vaccination.19
Program staff are using innovative grant-making mechanisms like the Small Business Innovation Research Program, which currently seeks applications for digital platforms to support cancer caregiving20
and informatics tools to measure cancer care coordination.21
Efforts to enhance current initiatives are ongoing, including a plan to renew funding for a network that focuses on improving cancer screening processes22
and promotion of cancer care delivery research within a network of community-based cancer practices historically focused on clinical trials.23
Several proposals for funding opportunities are moving through the NCI development and approval processes.
The program also convenes workshops to explore areas that may benefit from new funding opportunities or research resources, most recently on cancer caregiving; consequences of shared decision making; designing delivery systems and information technology interfaces with the user in mind; employment issues experienced by cancer patients and survivors; and new opportunities for data linkages. In addition, the program partnered with a nonfederal organization to hold the national conference, “Cancer Care Delivery in a Rapidly Changing Healthcare System.”24
Staff also participate in national scientific meetings and engage with the research and clinical communities in many settings.
The Healthcare Delivery Research Program at NCI was formed to address the need for empirical evidence to support challenges in cancer prevention, screening, diagnosis, treatment, survivorship, and end-of-life care. The program currently includes 3 components with complementary interests:
• Patient experiences and health outcomes
• Delivery system context
• Access, utilization, and outcomes at the population level
This structure and the activities described above may be modified in the future as the program responds to evolving research priorities of the Division and NCI. Continuous growth of the program will occur under the guidance of its first permanent leader, Paul Jacobsen, PhD, who joined NCI in September 2016. Over the next few years, program staff will continue to work toward meeting the mission of advancing innovative research to improve cancer care in service to the ultimate vision of optimal health outcomes for individual, families, and communities affected by cancer.