The National Cancer Institute's Role in Advancing Health-Care Delivery Research
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JNCI J Natl Cancer Inst (2021) 00(0): djab096
doi: 10.1093/jnci/djab096
First published online 16 May 2021
Commentary
The National Cancer Institute’s Role in Advancing Health-Care Delivery
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COMMENTARY
Research
Paul B. Jacobsen , PhD,* Janet de Moor, PhD, MPH, V. Paul Doria-Rose , DVM, PhD, Ann M. Geiger , PhD,
MPH, Sarah C. Kobrin, PhD, MPH, Annie Sampson, MSc, Ashley Wilder Smith, PhD, MPH
Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA
*Correspondence to: Paul Jacobsen, PhD, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, 9609
Medical Center Drive, Bethesda, MD 20892, USA (email: paul.jacobsen@nih.gov).
Abstract
Improvements in cancer care delivery have the potential to reduce morbidity and mortality from cancer, however, challenges
to delivery of recommended care limit progress. These challenges include growing demands for care, increasing treatment
complexity, inadequate care coordination, dramatic increases in costs, persistent disparities in care, and insufficient use of
evidence-based guidelines. Recognizing the important role of research in understanding and addressing these challenges,
the National Cancer Institute created the Healthcare Delivery Research Program (HDRP) in 2015 as a catalyst for expanding
work in this area. Health-care delivery research is a multidisciplinary effort which recognizes that care delivery occurs in a
multilevel system encompassing individuals, health-care systems, and communities. HDRP staff use a range of activities to
fulfill the program’s mission of advancing innovative research to improve delivery of care across the cancer control contin-
uum. In addition to developing funding opportunities, HDRP staff; support and facilitate the use of research infrastructure for
conducting health-care delivery research; oversee publicly available data that can be used to evaluate patterns, costs, and pa-
tient experiences of care; contribute to development and dissemination of standardized health measurement tools for public
use; and support professional development and training to build capacity within the field and grow the workforce. As HDRP
enters its sixth year, we appreciate the opportunity to reflect on the program’s progress in advancing the science of health-
care delivery. At the same time, we recognize the need for the program to evolve and develop additional resources and oppor-
tunities to address new and emerging challenges.
Advances in risk assessment, prevention, screening, and thera- taking advantage of recent initiatives around value-based reim-
pies have contributed to declining incidence and mortality rates bursement (7).
for many common cancers (1). At the same time, the United Recognizing the important role of research in generating the
States faces numerous challenges that could limit additional evidence that can inform policy and practice, the Division of
progress against cancer. Many of these challenges involve the Cancer Control and Population Sciences at the National Cancer
ability to deliver appropriate cancer-related care to all who Institute (NCI) created the Healthcare Delivery Research
could benefit. Concerns identified by the National Academy of Program (HDRP) in 2015 as a catalyst for expanding work in this
Medicine (2,3) and other organizations (4,5) include the rapidly area. NCI activities related to cancer care delivery prior to the
growing demands for care because of the aging population, the formation of HDRP were summarized in a recent publication (8).
increasing complexity of care, inadequate care coordination, The goal of this commentary is to describe the mission and or-
unsustainable increases in the costs of care, persistent dispar- ganization of HDRP, identify the many strategies by which the
ities in care, and insufficient use of evidence-based guidelines. program seeks to advance the science of cancer-related health-
Addressing these complex issues requires a multilevel strategy care delivery, and describe the program’s approach to develop-
that engages all who are involved in organizing, delivering, re- ing the next generation of scientific initiatives. Our intent is to
ceiving, and funding cancer-related care. Additionally, improv- provide a greater understanding of our work to members of the
ing the delivery of cancer-related care depends on fully cancer research community and to the broader community of
leveraging the rapidly evolving health data ecosystem (6) and individuals who wish to learn more about the NCI’s role in
Received: 16 March 2021; Revised: 26 April 2021; Accepted: 13 May 2021
Published by Oxford University Press 2021. This work is written by US Government employees and is in the public domain in the US.
12 | JNCI J Natl Cancer Inst, 2021, Vol. 00, No. 0
addressing the challenges of delivering high-quality cancer-re- federal legislation focused on cancer research [eg, the Beau
lated care in an equitable manner. Biden Cancer Moonshot component of the 21st Century Cures
The stated mission of HDRP is to advance innovative re- Act (10) and the Childhood Cancer Survivorship, Treatment,
search to improve the delivery of cancer-related care with the Access, and Research Act (11)]. Both acts identified key scientific
goal of obtaining optimal health outcomes for individuals, fami- areas in need of greater attention to accelerate and improve
lies, and communities affected by cancer. Use of the term cancer care and outcomes. HDRP staff link this information
health-care delivery research is intended to convey that scientific with NCI’s priorities to develop funding opportunity announce-
activity in this area is multidisciplinary in nature and benefits ments that are then published in the National Institutes of
from contributions by clinicians and researchers with back- Health (NIH) guide (12). In addition to grant funding, HDRP staff
grounds in fields that include medicine, nursing, health serv- support scientific activities by contributing to calls for and over-
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ices, epidemiology, public health, and social and behavioral sight of contracts, including those issued by NCI through the
COMMENTARY
sciences. This NCI-funded work occurs in a wide range of clini- Small Business Innovation Research program (13). This program
cal and community settings and spans prevention, screening, provides funding for small businesses in the United States to
diagnosis, acute treatment, survivorship, and end-of-life care. develop and commercialize novel technologies and products to
HDRP is organized into 3 branches, reflecting a tripartite fo- prevent, diagnose, and treat cancer.
cus on patient-level, health-care system–level, and community- HDRP staff also support and facilitate the use of research in-
level research. The Outcomes Research Branch facilitates re- frastructure for conducting health-care delivery research in
search to evaluate and improve care quality (eg, health-care community settings. An important example is the NCI
experiences) and health outcomes (eg, symptoms, health- Community Oncology Research Program (NCORP), a nationwide
related quality of life) of people affected by cancer. The Health network encompassing more than 1000 community-based hos-
Systems and Interventions Research Branch advances observa- pitals and practices. In addition to bringing cancer clinical trials
tional and intervention research on structural, organizational, to local communities, NCORP provides opportunities for con-
social, and behavioral factors that influence the delivery of can- ducting research aimed at understanding and improving the de-
cer care. The Healthcare Assessment Research Branch promotes livery of care in those settings where the majority of patients in
population-based research on demographic, social, economic, the United States will receive cancer care (ie, community hospi-
and health system factors as they relate to providing screening, tals and practices). In addition to increasing the generalizability
treatment, and survivorship services through a variety of activi- of findings, use of NCORP infrastructure provides access to pop-
ties including development, improvement, and dissemination ulations often underrepresented in cancer care delivery re-
of data resources to evaluate cancer-related health-care deliv- search (eg, rural and/or racial and ethnic minority patients). A
ery as provided in community settings. The 3 branches collabo- recent publication summarized cancer care delivery protocols
rate frequently, building on diverse expertise and shared developed in the first 5 years of NCORP’s existence and outlined
priorities across the program. its future directions (14).
Another important tool for advancing health-care delivery
research is publicly available data resources. HDRP staff are ac-
HDRP Approaches to Advancing the Science of tively involved in developing, maintaining, and supporting the
availability of public data and other research resources that can
Health-Care Delivery
be used to evaluate patterns of care, costs of care, and patient
HDRP staff use many tools to advance the science of cancer- experiences of care. These resources include data collected be-
related health-care delivery. Activities related to oversight of fore a cancer diagnosis, over the period of initial diagnosis and
grant and contract funds awarded to scientists around the treatment, and during long-term follow-up. Several of these
world may be most familiar. Using several different award resources feature linkages of the Surveillance, Epidemiology,
mechanisms, NCI supports research across the cancer control and End Results (SEER) cancer registry data with Medicare data,
and translational research continuums by providing funding for Medicare Health Outcome Survey data, Consumer Assessment
observational and intervention studies aimed at understanding of Healthcare Providers and Systems survey data, and most re-
and improving delivery of cancer prevention, screening, and cently, with Medicaid data (9). These SEER-linked resources pro-
early detection services as well as delivery of cancer treatment, vide opportunities to examine, at a population-level, issues
follow-up care, and supportive care. A listing of currently such as costs of care, diffusion of new therapies, patient experi-
funded grants awarded through HDRP can be found on the pro- ences of care, and quality-of-life issues. HDRP also funds sup-
gram’s website (9). There are, however, myriad other ways that plements to publicly available data resources to enhance their
HDRP staff seek to advance the science of health-care delivery. utility for health-care delivery research, including the Cancer
Activities include convening meetings of national experts, de- Control Supplement to the National Health Interview Survey (9)
veloping funding opportunities, supporting research infrastruc- and the Experiences with Cancer Survivorship Supplement to
ture, providing data resources, stewarding measurement tools, the Medical Expenditure Panel Survey (9).
and making training and educational opportunities available. Another area of scientific contribution is HDRP support of
Program staff also conduct their own research using secondary the development and dissemination of standardized measure-
data sources as well as through collaborations as project scien- ment tools available for public use. Examples include the
tists with research networks funded by NCI through cooperative HealthMeasures suite of patient-centered outcome tools
research agreements. (PROMIS, NIH Toolbox, Neuroqol, and ASCQ-Me) comprised of
Developing funding opportunities (eg, requests for applica- both patient-reported outcomes measures and performance-
tions, program announcements, notices of special interest, and based assessments of health and functioning (15). PROMIS alone
supplements to existing grants) is a key activity that HDRP staff comprises more than 300 self-report measures of physical,
engage in to stimulate research responsive to emerging issues mental, and social health for use with the general population
and priorities in health-care delivery. Several recent funding op- and individuals living with chronic conditions. HDRP staff were
portunity announcements were developed in response to also instrumental in the development and dissemination of theP. B. Jacobsen et al. | 3
Patient-Reported Outcomes version of the Common care delivery and outcomes. In addition, HDRP seeks to promote
Terminology Criteria for Adverse Events, which was designed to the growth of research into the use of behavioral economic
evaluate symptomatic toxicities by self-report in adults, adoles- strategies (eg, message framing and “nudges”) to improve deliv-
cents, and children participating in cancer clinical trials (9). ery of cancer-related care. Recognizing the negative impact of
HDRP actively supports professional development and train- rising costs at the individual level, HDRP also seeks to expand
ing to build capacity within the field and grow the workforce of research to understand and address the impact of the ability to
investigators who conduct health-care delivery research. HDRP afford care on receipt of recommended care and patient and
staff regularly mentor individuals through participation in sev- caregiver outcomes.
eral training programs. One notable example is the NCI Cancer Although HDRP has long advocated for research that
Prevention Fellowship, a postdoctoral training program addresses disparities in cancer care and the needs of vulnerable
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designed to train future leaders in cancer prevention and con- and underserved communities, events in 2020 focused greater
COMMENTARY
trol (16). To address the needs of midcareer individuals, in 2017, attention on the existence of systemic racism and social dispar-
HDRP launched a Visiting Scholar program in partnership with ities in American society and the need to devote greater effort
AcademyHealth. Scholars accepted into the program participate to addressing these problems. Regarding health, a growing body
in a year-long, funded, part-time opportunity to develop and of research has demonstrated how institutional structures, poli-
pursue research aims intended to advance their own career cies, practices, and norms contribute to racial inequities in
goals and the field of cancer care delivery research (9). HDRP health care and outcomes (20). Similarly, there is accumulating
also periodically develops and sponsors training opportunities evidence that differences in social advantage, reflected in char-
to address emerging methodological topics. A recent example is acteristics associated with greater resources, influence, and so-
the Multilevel Intervention Training Institute first offered in cial inclusion, are important contributors to differences in
2020 (9). Through a combination of lectures and interactive ses- health outcomes (21). To date, there has been limited research
sions, the institute covers a range of topics central to the design, investigating how racism at individual or system levels affects
successful funding, and conduct of research on multilevel the delivery of cancer-related care (22). To address this gap,
health-care delivery interventions. HDRP seeks to promote research aimed at increasing the under-
standing of the role of systemic racism in cancer care delivery.
Examples include research aimed at identifying organizational
and other health-care system level factors that promote medi-
Future Directions
cal mistrust and contribute to disparities in cancer care and out-
Guided by its mission, HDRP strives to identify emerging scien- comes. HDRP also seeks to promote research that effectively
tific trends to ensure that it continues to advance innovative re- addresses the impact of social disparities on delivery of high-
search to improve the delivery of care across the cancer quality cancer care.
continuum. Since HDRP was created, the challenges to deliver- In addition to these 3 topic areas, HDRP staff have identified
ing high-quality cancer care have continued to evolve. To sup- 3 crosscutting themes that are expected to enhance research ac-
port the next generation of initiatives, in 2020, HDRP held a tivities across multiple topic areas over the next few years. The
scientific retreat that featured an opportunity to interact with first theme is to promote identification of modifiable factors as-
external stakeholders involved in the organization and delivery sociated with delivery of cancer-related care by enhancing
of cancer-related care. The program also engaged in a struc- existing publicly available data resources or developing new
tured process for evaluating research gaps and opportunities resources. Toward this end, we plan to promote assemblage of
emerging from the changing societal and health-care context. data resources consistent with a social ecological model that
Based on these activities, HDRP identified 3 areas that are recognizes the complex multilevel determinants of care delivery
expected to be the focus of new or additional initiatives in the (23). Elements of this model that would be valuable to add in-
coming years: digital health, economic and financial issues, and clude information that better characterizes the patient (eg,
systemic racism in cancer care delivery. symptom reports), the providers of health care (eg, role in the
The expanded use of digital solutions to collect, store, and health-care team), the organization or practice setting (eg, orga-
deliver health-related data provides an opportunity not yet fully nizational policies and care processes), the community environ-
realized to transform the delivery of cancer-related care (17). ment (eg, availability of social services), and the policy
HDRP seeks to develop and support efforts to improve the use of environment (eg, changes in insurance coverage and reimburse-
digital health data both as a source of information for care deliv- ment). Data resources enriched with such information have nu-
ery research and as a tool for improving cancer-related care. merous possible applications. For example, the data could be
Interests in this area include facilitating the clinical use of used to better identify modifiable factors underlying disparities
patient-generated data and expanding abilities to identify, ex- first identified based on race or ethnicity.
tract, and use information on patterns and quality of care from The second theme is to promote methods to better integrate
electronic health records. Recognizing the rapid expansion in research evidence into clinical practice. Challenges to improv-
use of telehealth during the current pandemic (18), HDRP also ing the quality of cancer-related care include the slow adoption
seeks to identify and promote the use of evidence-based forms of novel forms of care that have demonstrated efficacy (24) and
of telehealth, especially with underserved populations, and to the continued delivery of existing forms of care that are of lim-
support research demonstrating how telehealth can be used to ited value or for which there is insufficient evidence of efficacy
improve quality-of-life outcomes, clinical outcomes, and appro- (25). This situation partly reflects limited research conducted to
priate health-care utilization across the continuum of cancer date aimed specifically at evaluating strategies to promote
care. adoption of evidence-based interventions as part of routine
The rising costs of cancer-related care pose serious chal- clinical practice (26). Responding to this gap, 2 recent Cancer
lenges at the societal level and at the individual patient level Moonshot initiatives included calls for research designed to im-
(19). HDRP seeks to expand research evaluating the impact of prove cancer symptom management and rates of colorectal
legislation, regulation, and reimbursement on cancer-related cancer screening, follow-up, and referral-to-care (27) in health-4 | JNCI J Natl Cancer Inst, 2021, Vol. 00, No. 0
care systems. Consistent with this call, several of the awarded Disclaimer: The observations and conclusions in this commen-
projects (28,29) use hybrid research designs that have a dual fo- tary are those of the authors and do not necessarily represent
cus on evaluating clinical effectiveness in “real-world” settings the official position of the National Cancer Institute, National
and the extent of adoption. As experience grows and evidence Institutes of Health, or other federal agencies.
accumulates for the use of these and other study designs to
change clinical practice, future funding announcements are
also likely to feature calls for research aimed at promoting eval-
uation of scalable, transferable, and sustainable intervention Data Availability
strategies. Not applicable.
The third theme is to promote cancer-related care delivery
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research on underserved and understudied populations based
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