Putting the Cancer Patient Front and Center: An Interview with NCI’s Dr. Paul Jacobsen
, by NCI Staff
In January 2015, NCI’s Division of Cancer Control and Population Sciences established the Healthcare Delivery Research Program (HDRP) to address the growing demand for more and better information on cancer care and to promote research that reduces the burden of cancer on individuals and society by improving the provision of evidence-based medical care.
In September 2016, Paul Jacobsen, Ph.D., became the HDRP associate director. In this interview, Dr. Jacobsen talks about the program’s goals and priorities.
What drew you to this position?
My research over the past 3 decades has focused on patient-centered health outcomes, a field that aims to understand the perspectives of patients, family, and caregivers and incorporate those perspectives into health care delivery, with the goal of optimizing patient outcomes. I have also examined the behavioral aspects of cancer prevention and detection and supportive care. Before coming to NCI, I was the founding chair of Moffitt Cancer Center’s Department of Health Outcomes and Behavior.
Two things excite me about leading HDRP. First, there is unprecedented interest in examining and improving how health care in general, and cancer care in particular, are organized and delivered. Consequently, the field of health care delivery research is attracting a great deal of attention and intellectual talent.
Second, I am excited about leading a program whose goal is to advance innovative research to improve the delivery of cancer care. HDRP has outstanding resources and is staffed with highly trained and accomplished individuals from diverse backgrounds, including medicine, nursing, health services, public health, and social science. I am looking forward to the opportunity to play a major role in shaping the research agenda and advancing the science in this vital area.
Why is it important to study health care delivery?
There is much we can learn about how to improve the quality of cancer care in ways that enhance patient experiences and quality of life across the cancer continuum, from prevention to post-treatment and end-of-life care.
Studying health care delivery in a scientifically rigorous, evidence-based, and patient-centered manner is fundamental for making advances in a number of critical areas. Although this line of research can help improve cancer outcomes, such as quality of life, treatment-related adverse symptoms, long-term health, and survival, more rigorous study of how care is delivered can also help to reduce cancer-related health disparities and the health, psychosocial, and economic burden of cancer for individuals, their families, and society overall.
Research in this area can help us better understand the interactions among the many factors that influence care, such as patients’ knowledge, attitudes, and beliefs; patients’ financial resources; health providers’ knowledge and communication style; and the structure of health care services. The knowledge gained from such research can guide changes in clinical practice and policy that have an impact on the quality, value, and delivery of cancer care.
What are HDRP’s goals and priorities?
The goal of our program is to advance innovative research that will result in improved delivery of cancer care. Cancer care refers to health services offered across the cancer continuum, from screening individuals and treating cancer patients to following cancer survivors and providing end-of-life psychosocial support.
The program’s organization into three branches reflects HDRP’s three principal areas of concentration.
The Outcomes Research Branch focuses on the patient and seeks to advance research on understanding and improving the health and well-being of patients, as well as that of informal caregivers and family members. Current priorities include support for research on interventions to assist family caregivers and on tools for assessing patients’ perspectives on the cancer treatment experience.
The Health Systems and Interventions Research Branch focuses on contextual factors in health care, such as clinician behavior and the organizational structure of practice settings, and how they influence the delivery of care. Current priorities include support for research on interventions designed to promote HPV vaccination and addressing overscreening for cancer in older adults with a limited life expectancy.
Finally, the Healthcare Assessment Research Branch focuses on access to and provision of cancer care at the population level. Current priorities include support for research on the financial burden of cancer care and on disparities in care.
Is HDRP working to address some of the goals of the Cancer Moonshot and the Blue Ribbon Panel report recommendations?
I am honored to have been selected to co-chair the NCI Implementation Team for Symptom Management Research in response to the Blue Ribbon Panel's recommendation to support the development of guidelines for managing patient-reported symptoms.
HDRP’s work is aligned with three Blue Ribbon Panel recommendations: the work of the HDRP Outcomes Research Branch is aligned with the symptom management recommendation; the HDRP Healthcare Assessment Research Branch's work is aligned with the recommendation to create a national cancer data ecosystem; and the efforts of the HDRP Health Systems and Interventions Research Branch are aligned with the recommendation for expanded use of proven prevention and early detection strategies.
What are some specific examples of research that HDRP is funding?
HDRP has developed a variety of measurement tools that are available to researchers. One such tool is the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE™), a patient-reported outcome measurement system that is used to assess symptomatic adverse events such as nausea, fatigue, and neuropathy in cancer patients enrolled in cancer clinical trials. PRO-CTCAE is publicly available for all investigators to use in their clinical trials.
The SEER–Medicare Linked Database is an example of a public-use data set we’ve developed that serves as a national resource for conducting cancer-related health services research and health economics studies. The data are derived from the Surveillance, Epidemiology and End Results program of cancer registries that collect clinical, demographic, and cause-of-death information for persons with cancer and from detailed information about Medicare beneficiaries with cancer.
In addition to our grant portfolio, HDRP also awards supplements to the research community to support special initiatives. One of these initiatives, for example, supports collaborations that bring together NCI cancer centers, CDC programs, and state/local health departments and their immunization programs. The goal is to enhance research that tests strategies for improving HPV vaccine uptake in primary care settings.