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A History of Health Economics and Healthcare Delivery Research at the National Cancer Institute

A History of Health Economics and Healthcare Delivery Research at the National Cancer Institute Abstract With increased attention to the financing and structure of healthcare, dramatic increases in the cost of diagnosing and treating cancer, and corresponding disparities in access, the study of healthcare economics and delivery has become increasingly important. The Healthcare Delivery Research Program (HDRP) in the Division of Cancer Control and Population Sciences at the National Cancer Institute (NCI) was formed in 2015 to provide a hub for cancer-related healthcare delivery and economics research. However, the roots of this program trace back much farther, at least to the formation of the NCI Division of Cancer Prevention and Control in 1983. The creation of a division focused on understanding and explaining trends in cancer morbidity and mortality was instrumental in setting the direction of cancer-related healthcare delivery and health economics research over the subsequent decades. In this commentary, we provide a brief history of health economics and healthcare delivery research at NCI, describing the organizational structure and highlighting key initiatives developed by the division, and also briefly discuss future directions. HDRP and its predecessors have supported the growth and evolution of these fields through the funding of grants and contracts; the development of data, tools, and other research resources; and thought leadership including stimulation of research on previously understudied topics. As the availability of new data, methods, and computing capacity to evaluate cancer-related healthcare delivery and economics expand, HDRP aims to continue to support this growth and evolution. The year 2021 marks the 50th anniversary of the passage of the National Cancer Act, which reorganized and expanded the National Cancer Institute (NCI) and granted its director broad authority to develop a National Cancer Program (1). The act’s passage was accompanied by a declaration of a “war on cancer” and came at a time when our understanding of the causes of cancer was expanding rapidly, but the translation of advancing basic science knowledge into decreases in cancer morbidity and mortality was more elusive. By the 1980s, there were an increasing number of cancer prevention, screening, and treatment options available to clinicians, but their dissemination into routine clinical practice lagged behind, and patient outcomes did not improve as rapidly as expected (2). Responding to this gap, the NCI created the Division of Cancer Prevention and Control (DCPC) in 1983, with a vision of cancer control as “a science based on empirical research that leads to social benefit” (3). Research related to health economics was central to the activities of DCPC from the beginning. In addition to a focus on financial outcomes associated with cancer-related care—including healthcare costs and value of care—other economic issues, including supply and demand and the functioning of healthcare markets, as well as issues of equity and access, were essential components of the division’s mission. As did the scope of the health economics field, these interests deepened and broadened over time and remain well aligned with a National Institutes of Health (NIH) notice from 2015, which clarified NIH’s priorities in health economics research. Specifically, the notice states that “NIH will continue to accept applications involving health economics research in which health outcomes and health-related behaviors are the primary focus, and the connection between the subject(s) of the study and improved understanding of health are clear and explicit” (4). Appropriate to the NIH mission “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability” (5), better health outcomes and more equal access to services, as opposed to mitigation of costs, are the primary focus of NIH-supported research in health economics. NCI defines healthcare delivery research as “the study of cancer care, factors influencing care, and outcomes of care” (6). Health economics research occurs within this broader context of how care is delivered in the community. Conversely, the successful delivery of healthcare is strongly influenced by economic factors. Because the 2 areas are intertwined, and because they have historically been housed within the same group at NCI, we present here a summary of the history of both health economics and healthcare delivery research at NCI. We first outline the organizational structure within which healthcare delivery and health economics research has been conducted at NCI, to give context to the multidisciplinary environment in which this research has been supported. Then we provide examples of initiatives and activities supported by the division that highlight how NCI efforts served to promote the growth and development of these fields. Finally, we look toward the future to highlight evolving priorities and activities. Creating a Focal Point for Health Economics and Healthcare Delivery Research The NCI is currently composed of 7 different divisions, as well as additional offices and centers that work together to support a comprehensive cancer research agenda. Within each division, there are programs focused on more specific areas of science, and within each program are smaller subunits called branches, each having an even more targeted scientific focus (7). Divisions can be extramural, with an explicit mission to fund research and training at academic institutions and medical centers across the United States, or intramural, with a focus on conducting in-house research in the biomedical sciences. Healthcare delivery and health economics research at NCI has for the most part been conducted within a hybrid environment, within an extramural division but including scientists who both manage grants and contracts and have expertise in the subject matter of health economics and healthcare delivery research, to promote developing and strengthening data sources and methods for their use by a wide range of extramural investigators. In the early days of DCPC, healthcare delivery and economics research was housed in the Surveillance Research Program (SRP), within the Applied Research Branch. This branch had very broad scientific interests beyond healthcare delivery and economics, including modeling and statistical methods, cancer risk assessment, and understanding health disparities (3). Over time, activities in all of these areas expanded to the extent that it provided an opportunity for adjustments to improve effectiveness of the programs. In 1997, as part of a broader reorganization of NCI, DCPC was split into 2 new divisions: the Division of Cancer Prevention and the Division of Cancer Control and Population Sciences (DCCPS). Several years later, applied research was elevated to become its own program within DCCPS, the Applied Research Program (ARP). Within ARP, there was for the first time a branch focused on healthcare delivery research—the Health Services and Economics Branch (HSEB). Another branch, the Outcomes Research Branch, was also added to expand the focus of the program to better understand and improve patient experiences, with emphasis on measuring health-related quality of life, patient perceptions of care, and economic burden. The Health Services and Economics and Outcomes Research branches were meant to be complementary, bringing together clinical, economic, and healthcare delivery questions. An additional reorganization of DCCPS in 2015 led to the formation of the Healthcare Delivery Research Program (HDRP) (8,9). HDRP replaced the former ARP, and HSEB was renamed the Healthcare Assessment Research Branch. In addition to the Healthcare Assessment and Outcomes Research branches, HDRP added a third branch previously housed within DCCPS’s Behavioral Research Program—the Health Systems and Interventions Research Branch (formerly called the Process of Care Research Branch). This branch brought additional expertise in behavioral science applied to the healthcare delivery environment, as well as specific interests in multilevel research and interventions to improve healthcare delivery. In summary, healthcare delivery research at NCI has grown from a subsection within a branch to a dedicated branch to an entire program, with an increased number of scientific disciplines represented. As compared with that of departments in most academic settings, the structure of HDRP and its predecessors is unusual because it brings together scientists from multiple disciplines—including healthcare delivery, health economics, epidemiology, social and behavioral sciences, and clinical medicine, among others—under the same organizational unit. This structure has facilitated tackling the enormous challenge of supporting cancer care economics and delivery research to better understand and improve the US healthcare system, from a number of different angles using many different approaches. Below and in Table 1, we highlight some key initiatives and activities supported by DCCPS that have strengthened healthcare delivery and health economics in cancer control research. Table 1. Examples of initiatives sponsored by the National Cancer Institute related to healthcare delivery and health economicsa Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) a CMS = Centers for Medicare and Medicaid Services; NCI = National Cancer Institute; SEER = Surveillance, Epidemiology, and End Results. Open in new tab Table 1. Examples of initiatives sponsored by the National Cancer Institute related to healthcare delivery and health economicsa Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) a CMS = Centers for Medicare and Medicaid Services; NCI = National Cancer Institute; SEER = Surveillance, Epidemiology, and End Results. Open in new tab Major NCI Initiatives Building Data Infrastructures to Enhance Population Surveillance The Applied Research Branch was originally based within SRP, which is also the NCI home of the Surveillance, Epidemiology, and End Results (SEER) program, which aggregates and makes broadly available data drawn from NCI-supported, population-based cancer registries that are nationally representative. In addition to the monitoring of cancer incidence and mortality through SEER, though, other systems were needed to assess trends in prevention and screening behaviors and the dissemination of new technologies for cancer diagnosis and new cancer treatments. A large part of the mission of HSEB (and now HDRP) was to develop resources to monitor and assess patterns of cancer-related healthcare delivery, with the goal of identifying potentially modifiable factors that can be addressed to improve care and outcomes. One approach has been to develop linkages between SEER and claims and other data from the Centers for Medicare and Medicaid Services (28), as well as with other sources. A linkage between SEER and Medicare claims and enrollment data was first performed in 1991 (14,15). Since that time, the SEER-Medicare data have probably been the most influential data resource available for cancer-related healthcare delivery research, with its use growing over time such that there are currently 150-200 each of data requests and published manuscripts annually (Figure 1). To accommodate the evolving needs of the research community, SEER-Medicare and other linkages have been expanded and improved over the years, adding, for example, more data about facility and provider characteristics, nursing and home healthcare, and pharmacy-based drug utilization (16). Beyond claims, other SEER-Medicare linkages have been performed with patient surveys including the Consumer Assessment of Healthcare Providers and Systems (17), which measures Medicare patients’ care experiences, and the Medicare Health Outcomes Survey (18), which provides health-related quality-of-life information about Medicare Advantage enrollees. Most recently, a linkage between SEER data and national Medicaid enrollment data (19) has been made available to the research community (20). Figure 1. Open in new tabDownload slide SEER-Medicare data requests and published manuscripts, by year. Figure 1. Open in new tabDownload slide SEER-Medicare data requests and published manuscripts, by year. Another approach has been to leverage the SEER cancer registries as a sampling frame to conduct population-based studies of cancer treatment. For example, the Patterns of Care studies (13) were started in 1987 to evaluate the dissemination of state-of-the-art cancer therapies into community oncology practice. The ongoing Patterns of Care studies focus on 2-3 different cancer sites annually, collecting more detailed treatment data on a subset of SEER cases using medical record verification. They also assess patient-, provider-, and health system–level factors that are associated with the receipt of specific therapies. The 2020 study captured, for the first time, information regarding discussions of the cost of cancer treatment between patients and providers. Finally, population trends in cancer-related healthcare have been assessed through large national surveys. For example, the Cancer Control Supplement to the National Health Interview Survey (10) has been conducted in partnership with the Centers for Disease Control and Prevention since 1987. It allows for nationally representative estimates of cancer screening behaviors, tobacco use and control, and diet and physical activity. Because the supplement is embedded in a self-reported health survey with sociodemographic information, a wide array of analyses are possible to improve understanding of population health. Moreover, these data have been linked to mortality (29), and other data such as Medicare and Medicaid claims (30), to enhance understanding of economic issues, including those related to health disparities. A subset of National Health Interview Survey participants provides the sample for the Medical Expenditure Panel Survey (MEPS). MEPS, sponsored by the Agency for Healthcare Research and Quality, is the only national survey that collects detailed data on healthcare service use and costs. Data are collected from patients and their providers to improve accuracy. The Experiences with Cancer Survivorship Supplement to the MEPS, first fielded in 2011, monitors the individual economic impact of cancer diagnosis and treatment (11,12). The supplement is sponsored by NCI, Centers for Disease Control and Prevention, and Agency for Healthcare Research and Quality in collaboration with other federal and nonfederal partners. It includes questions related to financial hardship, access to medical care, employment, healthcare utilization and expenditures, and informal caregivers. Analyses of MEPS supplement data were among the first to identify the long-term financial implications of cancer treatment on cancer patients and survivors. In addition to MEPS, other national surveys sponsored by DCCPS have been conducted at the provider level and cover topics such as attitudes and practices regarding cancer screening (31) and use of precision medicine, including discussions of costs of care (32). Research Networks While the above data resources have been instrumental in documenting trends in cancer-related healthcare delivery and outcomes over time, all have limitations. For example, measuring cancer screening via national surveys such as the National Health Interview Survey is subject to inaccuracies in respondents’ self-report of the occurrence and timing of screening examinations, and medical claims-based research cannot capture certain aspects of care such as results of screening or laboratory tests or patient-reported symptoms. Therefore, HDRP has also funded research networks that allow for more detailed capture of healthcare data. Although by necessity these networks include a more limited number of healthcare delivery settings and are therefore not as generalizable to the United States (US) population, they serve as an important supplement to national and regional data by providing more granular data than are available at the national level. Networks funded through ARP and HDRP have included the Breast Cancer Surveillance Consortium (22), formed in 1994, which currently comprises 6 breast imaging registries with linkages to cancer registries across the United States that conduct research to improve the quality and outcomes of breast cancer screening. Another example is the Cancer Research Network (23), which was first funded in 1998 as a consortium of integrated healthcare delivery systems and associated research groups with the goal of improving cancer-related care across the continuum, from prevention to screening, treatment, and survivorship care. The Cancer Research Network was a pioneer in the extraction of electronic data from medical records systems for research purposes, developing the Virtual Data Warehouse, based on a set of common data standards that has served as a model for numerous other distributed research networks (33). It also provided a data source for the estimation of cancer care costs in patients younger than 65 years, who are not age eligible for Medicare insurance coverage (34). The development of the Virtual Data Warehouse also made it more efficient for network sites to participate in other NCI-funded research networks such as the Cancer Care Outcomes Research and Surveillance Consortium (24) and Population-based Research to Optimize the Screening Process (25,26), with aims of improving treatment for lung and colorectal cancer and screening for breast, cervical, colorectal, and lung cancer, respectively. These networks have been able to explore a wide range of outcomes including the cost of, access to, and quality of care. Another network developed within SRP, the Cancer Intervention and Surveillance Modeling Network (CISNET), (27) is focused on comparative mathematical simulation modeling to estimate the impact of prevention, screening, and treatment interventions on cancer outcomes. Continuously funded by NCI since 2000, CISNET currently includes 6 cancer sites (breast, cervical, colorectal, lung, prostate, and esophageal) with 3-6 models for each. Simulation allows for the synthesis of the best available data about disease natural history, accuracy of screening and diagnostic tests, and efficacy of interventions to predict the impact of specific screening or treatment regimens on population-level outcomes. Additionally, comparative modeling allows for a better understanding of the degree of certainty surrounding model outputs. Specifically, similar estimates across models suggest more certainty, and disparate results can help pinpoint areas where better data to inform model inputs are needed. One area where CISNET has been very influential in informing policy is through collaborations with the US Preventive Services Task Force. Since 2008 the Task Force has incorporated CISNET modeling into its evidence review and recommendation development process in evaluating cancer screening for breast, colorectal, lung, and cervical cancers. CISNET models were instrumental in the decisions to lower the colorectal cancer screening start age from 50 to 45 years (35) and for modifying lung cancer screening eligibility by reducing both the start age from 55 to 50 years and the number of pack-years of smoking from 30 to 20 (36). A 2021 addition is the CISNET Incubator program, translating CISNET’s model of success to cancer sites for which there has been limited population modeling efforts to date and little to no comparative modeling. This program, with 2-3 models per cancer site, has added gastric, bladder, and uterine cancers and multiple myeloma. Economic modeling (especially cost effectiveness) has played an integral role in CISNET analyses across many cancer sites [eg, the cost-effectiveness of risk-stratified colorectal screening based on polygenic risk (37) and a cost-effectiveness analysis of lung cancer screening in the United States (38)]. A complete list of more than 100 CISNET economic modeling studies (including methodologic investigations) can be found on the network’s website (39). Methods Development, Tools, and Thought Leadership Using the data resources described above and others, DCCPS scientists have developed standardized methods and measures for use by the research community. Economic methods were used to assess the national capacity to meet the demand for screening technologies for breast (40) and colorectal (41) cancer as well as to evaluate costs related to new technologies such as genetic testing for hereditary predisposition to cancer (42,43). DCCPS investigators have also developed methods, tools, and guidance on such topics as using medical claims to assess patient comorbidity burden (44,45) and measurement of health disparities using cancer registry and other data (eg, the Health Disparities Calculator) (46,47). Estimation of the costs of cancer care has been a major focus within SRP and ARP and HDRP, with many efforts over the years to quantify the cost burden of cancer using SEER-Medicare data and methods developed according to phase of care (48-52); one seminal finding of this work was the U-shape of monthly costs between cancer diagnosis and date of death among patients who died of cancer (48). Dissemination of research findings and calling attention to and stimulating research in emerging areas are also key to the mission of HDRP. In addition to the publication of funding announcements to promote grant applications in specific topic areas (53), multiple other approaches are used. Workshops are routinely sponsored by HDRP to focus attention on understudied topics, such as methods for the estimation of healthcare costs (54), as discussed above, and conducting research to measure and intervene on organizational factors that influence cancer-related healthcare delivery (55). HDRP also conducts trainings for the research community, such as workshops on the use of SEER-Medicare data (21) as well as the Multilevel Training Institute, which provides participants with a thorough grounding in conducting multilevel intervention research (56). Lastly, publication of journal supplements and monographs describing the proceedings of workshops and/or methods and measures developed by HDRP continue to support research efforts throughout the United States and beyond; examples of these include topics such as the use of SEER-Medicare data (15,16), healthcare cost estimation (54), comparative studies across health systems (57), outcomes assessment (58), and measures of disparities (47) and racial and ethnic discrimination (59,60) in healthcare. Future Directions Recent years have seen major advances in cancer prevention and control including, for example, development of drugs that target specific mutations and therapies that activate patients’ immune systems to fight cancer. Many of these new therapies are expensive, imposing significant financial burdens on patients at the same time they improve survival. Further, these changes are occurring in a rapidly changing health insurance environment, with patients often expected to bear higher premiums and an increasing share of treatment costs. The financial burden resulting from the combination of expensive therapies in the context of preexisting social inequalities leads to increased health disparities (61). Other recent challenges for cancer prevention and control have come from the major stresses put on the healthcare system by the COVID-19 pandemic and increasing recognition of structural determinants of health, including systemic racism in healthcare. Through a 2020-2021 strategic planning process, the HDRP has identified 3 priority areas to emphasize in the development of our research program in the coming years: health information technology and telehealth, systemic racism in healthcare delivery, and economic and financial issues (9). Findings from the Future of Cancer Health Economics Research Conference, as described in more detail in the other manuscripts in this supplement, will also be incorporated into ongoing planning efforts. Since 1983, HDRP and its predecessors have supported research efforts through both the funding of extramural investigators and development of data and other resources. As the availability of new data, methods, and computing capacity to evaluate cancer-related healthcare delivery expand, we aim to enhance and improve these resources in support of the research community, to further promote the growth of healthcare delivery and health economics research. Funding No funding was received for this commentary. Notes Role of the funder: Not applicable. Disclosures: The authors indicate no conflicts of interest. Author contributions: All authors participated in the conceptualization and writing of this manuscript. Acknowledgements: The authors thank Dr Lindsey Enewold for providing the graph documenting the number of SEER-Medicare data requests and publications by year. Disclaimers: The views expressed here are those of the authors only and do not necessarily reflect the views of the National Cancer Institute or National Institutes of Health. Prior presentation: Some of this content was presented at the 2020 Future of Cancer Health Economics Research virtual conference. Data Availability No new data were generated or analysed in support of this research. References 1 National Cancer Institute. National Cancer Act of 1971. https://www.cancer.gov/about-nci/overview/history/national-cancer-act-1971. Accessed September 22, 2021. 2 Tiwari AK , Roy HK. Progress against cancer (1971-2011): how far have we come? J Intern Med . 2012 ; 271 ( 4 ): 392 – 399 . Google Scholar Crossref Search ADS PubMed WorldCat 3 Kaluzny AD , O’Brien DM. 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Organizational Research in Healthcare Workshop; 2021. https://healthcaredelivery.cancer.gov/media/organizational-research-workshop.html. Accessed September 23, 2021. 56 National Cancer Institute. Multilevel Intervention Training Institute (MLTI); 2022. https://healthcaredelivery.cancer.gov/mlti/. Accessed September 23, 2021. 57 Yabroff KR , Francisci S, Mariotto A, et al. Advancing comparative studies of patterns of care and economic outcomes in cancer: challenges and opportunities . J Natl Cancer Inst Monogr . 2013 ; 2013 ( 46 ): 1 – 6 . Google Scholar Crossref Search ADS PubMed WorldCat 58 Lipscomb J , Gotay C, Snyder C, eds. Outcomes Assessment in Cancer: Measures, Methods and Applications. Cambridge : Cambridge University Press ; 2004 . 59 Shariff-Marco S , Breen N, Landrine H, et al. Measuring everyday racial/ethnic discrimination in health surveys: how best to ask the questions, in one or two stages, across multiple racial/ethnic groups? Du Bois Rev . 2011 ; 8 ( 1 ): 159 – 177 . Google Scholar Crossref Search ADS PubMed WorldCat 60 Shariff-Marco S , Gee GC, Breen N, et al. A mixed-methods approach to developing a self-reported racial/ethnic discrimination measure for use in multiethnic health surveys . Ethn Dis . 2009 ; 19 ( 4 ): 447 – 453 . Google Scholar PubMed OpenURL Placeholder Text WorldCat 61 Phelan JC , Link BG. Controlling disease and creating disparities: a fundamental cause perspective . J Gerontol B Psychol Sci Soc Sci . 2005 ; 60 ( spec no 2 ): 27 – 33 . Google Scholar PubMed OpenURL Placeholder Text WorldCat Author notes Retired. Published by Oxford University Press 2022. This work is written by (a) US Government employee(s) and is in the public domain in the US. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) Published by Oxford University Press 2022. This work is written by (a) US Government employee(s) and is in the public domain in the US. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

A History of Health Economics and Healthcare Delivery Research at the National Cancer Institute

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Oxford University Press
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Copyright © 2022 Oxford University Press
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1052-6773
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1745-6614
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10.1093/jncimonographs/lgac003
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Abstract

Abstract With increased attention to the financing and structure of healthcare, dramatic increases in the cost of diagnosing and treating cancer, and corresponding disparities in access, the study of healthcare economics and delivery has become increasingly important. The Healthcare Delivery Research Program (HDRP) in the Division of Cancer Control and Population Sciences at the National Cancer Institute (NCI) was formed in 2015 to provide a hub for cancer-related healthcare delivery and economics research. However, the roots of this program trace back much farther, at least to the formation of the NCI Division of Cancer Prevention and Control in 1983. The creation of a division focused on understanding and explaining trends in cancer morbidity and mortality was instrumental in setting the direction of cancer-related healthcare delivery and health economics research over the subsequent decades. In this commentary, we provide a brief history of health economics and healthcare delivery research at NCI, describing the organizational structure and highlighting key initiatives developed by the division, and also briefly discuss future directions. HDRP and its predecessors have supported the growth and evolution of these fields through the funding of grants and contracts; the development of data, tools, and other research resources; and thought leadership including stimulation of research on previously understudied topics. As the availability of new data, methods, and computing capacity to evaluate cancer-related healthcare delivery and economics expand, HDRP aims to continue to support this growth and evolution. The year 2021 marks the 50th anniversary of the passage of the National Cancer Act, which reorganized and expanded the National Cancer Institute (NCI) and granted its director broad authority to develop a National Cancer Program (1). The act’s passage was accompanied by a declaration of a “war on cancer” and came at a time when our understanding of the causes of cancer was expanding rapidly, but the translation of advancing basic science knowledge into decreases in cancer morbidity and mortality was more elusive. By the 1980s, there were an increasing number of cancer prevention, screening, and treatment options available to clinicians, but their dissemination into routine clinical practice lagged behind, and patient outcomes did not improve as rapidly as expected (2). Responding to this gap, the NCI created the Division of Cancer Prevention and Control (DCPC) in 1983, with a vision of cancer control as “a science based on empirical research that leads to social benefit” (3). Research related to health economics was central to the activities of DCPC from the beginning. In addition to a focus on financial outcomes associated with cancer-related care—including healthcare costs and value of care—other economic issues, including supply and demand and the functioning of healthcare markets, as well as issues of equity and access, were essential components of the division’s mission. As did the scope of the health economics field, these interests deepened and broadened over time and remain well aligned with a National Institutes of Health (NIH) notice from 2015, which clarified NIH’s priorities in health economics research. Specifically, the notice states that “NIH will continue to accept applications involving health economics research in which health outcomes and health-related behaviors are the primary focus, and the connection between the subject(s) of the study and improved understanding of health are clear and explicit” (4). Appropriate to the NIH mission “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability” (5), better health outcomes and more equal access to services, as opposed to mitigation of costs, are the primary focus of NIH-supported research in health economics. NCI defines healthcare delivery research as “the study of cancer care, factors influencing care, and outcomes of care” (6). Health economics research occurs within this broader context of how care is delivered in the community. Conversely, the successful delivery of healthcare is strongly influenced by economic factors. Because the 2 areas are intertwined, and because they have historically been housed within the same group at NCI, we present here a summary of the history of both health economics and healthcare delivery research at NCI. We first outline the organizational structure within which healthcare delivery and health economics research has been conducted at NCI, to give context to the multidisciplinary environment in which this research has been supported. Then we provide examples of initiatives and activities supported by the division that highlight how NCI efforts served to promote the growth and development of these fields. Finally, we look toward the future to highlight evolving priorities and activities. Creating a Focal Point for Health Economics and Healthcare Delivery Research The NCI is currently composed of 7 different divisions, as well as additional offices and centers that work together to support a comprehensive cancer research agenda. Within each division, there are programs focused on more specific areas of science, and within each program are smaller subunits called branches, each having an even more targeted scientific focus (7). Divisions can be extramural, with an explicit mission to fund research and training at academic institutions and medical centers across the United States, or intramural, with a focus on conducting in-house research in the biomedical sciences. Healthcare delivery and health economics research at NCI has for the most part been conducted within a hybrid environment, within an extramural division but including scientists who both manage grants and contracts and have expertise in the subject matter of health economics and healthcare delivery research, to promote developing and strengthening data sources and methods for their use by a wide range of extramural investigators. In the early days of DCPC, healthcare delivery and economics research was housed in the Surveillance Research Program (SRP), within the Applied Research Branch. This branch had very broad scientific interests beyond healthcare delivery and economics, including modeling and statistical methods, cancer risk assessment, and understanding health disparities (3). Over time, activities in all of these areas expanded to the extent that it provided an opportunity for adjustments to improve effectiveness of the programs. In 1997, as part of a broader reorganization of NCI, DCPC was split into 2 new divisions: the Division of Cancer Prevention and the Division of Cancer Control and Population Sciences (DCCPS). Several years later, applied research was elevated to become its own program within DCCPS, the Applied Research Program (ARP). Within ARP, there was for the first time a branch focused on healthcare delivery research—the Health Services and Economics Branch (HSEB). Another branch, the Outcomes Research Branch, was also added to expand the focus of the program to better understand and improve patient experiences, with emphasis on measuring health-related quality of life, patient perceptions of care, and economic burden. The Health Services and Economics and Outcomes Research branches were meant to be complementary, bringing together clinical, economic, and healthcare delivery questions. An additional reorganization of DCCPS in 2015 led to the formation of the Healthcare Delivery Research Program (HDRP) (8,9). HDRP replaced the former ARP, and HSEB was renamed the Healthcare Assessment Research Branch. In addition to the Healthcare Assessment and Outcomes Research branches, HDRP added a third branch previously housed within DCCPS’s Behavioral Research Program—the Health Systems and Interventions Research Branch (formerly called the Process of Care Research Branch). This branch brought additional expertise in behavioral science applied to the healthcare delivery environment, as well as specific interests in multilevel research and interventions to improve healthcare delivery. In summary, healthcare delivery research at NCI has grown from a subsection within a branch to a dedicated branch to an entire program, with an increased number of scientific disciplines represented. As compared with that of departments in most academic settings, the structure of HDRP and its predecessors is unusual because it brings together scientists from multiple disciplines—including healthcare delivery, health economics, epidemiology, social and behavioral sciences, and clinical medicine, among others—under the same organizational unit. This structure has facilitated tackling the enormous challenge of supporting cancer care economics and delivery research to better understand and improve the US healthcare system, from a number of different angles using many different approaches. Below and in Table 1, we highlight some key initiatives and activities supported by DCCPS that have strengthened healthcare delivery and health economics in cancer control research. Table 1. Examples of initiatives sponsored by the National Cancer Institute related to healthcare delivery and health economicsa Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) a CMS = Centers for Medicare and Medicaid Services; NCI = National Cancer Institute; SEER = Surveillance, Epidemiology, and End Results. Open in new tab Table 1. Examples of initiatives sponsored by the National Cancer Institute related to healthcare delivery and health economicsa Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) Initiative type and name . NCI funding years . Brief description . Citations . Data infrastructure and population surveillance National Health Interview Survey Cancer Control Supplement 1987-present National survey to monitor trends in knowledge, attitudes, and practices of cancer-related health behaviors (10) Experiences with Cancer Survivorship Supplement to the Medical Expenditure Panel Survey 2011-present National survey to provide estimates of the burden of cancer including medical care expenditures (11,12) Patterns of Care 1987-present Study evaluating dissemination of cancer therapies into community oncology practice, through additional abstraction of more detailed treatment information from medical records of a subset of SEER cases (13) SEER-Medicare and other SEER-CMS linkages 1991-present Linkage between SEER cancer registry data and Medicare and Medicaid enrollment, claims, and survey data, for use in addressing a wide variety of epidemiological and health services research questions (14-21) Research networks Breast Cancer Surveillance Consortium 1994-present Breast imaging registries focused on research to improve the delivery and quality of breast cancer screening (22) Cancer Research Network 1998-2019 Integrated healthcare delivery systems conducting research to improve cancer care delivery across the care continuum (23) Cancer Care Outcomes Research and Surveillance Consortium 2001-2009 Observational study to identify clinically important differences in lung and colorectal cancer treatment and outcomes and evaluate the reasons for these differences, including from the perspective of patients and their providers (24) Population-based Research to Optimize the Screening Process 2011-present Observational study to better understand and improve the screening processes for breast, cervical, colorectal, and lung cancer in community healthcare settings (25,26) Cancer Intervention and Surveillance Modeling Network 2000-present Use of comparative simulation modeling to estimate the impact of cancer control interventions in prevention, screening, and treatment on cancer incidence and mortality (27) a CMS = Centers for Medicare and Medicaid Services; NCI = National Cancer Institute; SEER = Surveillance, Epidemiology, and End Results. Open in new tab Major NCI Initiatives Building Data Infrastructures to Enhance Population Surveillance The Applied Research Branch was originally based within SRP, which is also the NCI home of the Surveillance, Epidemiology, and End Results (SEER) program, which aggregates and makes broadly available data drawn from NCI-supported, population-based cancer registries that are nationally representative. In addition to the monitoring of cancer incidence and mortality through SEER, though, other systems were needed to assess trends in prevention and screening behaviors and the dissemination of new technologies for cancer diagnosis and new cancer treatments. A large part of the mission of HSEB (and now HDRP) was to develop resources to monitor and assess patterns of cancer-related healthcare delivery, with the goal of identifying potentially modifiable factors that can be addressed to improve care and outcomes. One approach has been to develop linkages between SEER and claims and other data from the Centers for Medicare and Medicaid Services (28), as well as with other sources. A linkage between SEER and Medicare claims and enrollment data was first performed in 1991 (14,15). Since that time, the SEER-Medicare data have probably been the most influential data resource available for cancer-related healthcare delivery research, with its use growing over time such that there are currently 150-200 each of data requests and published manuscripts annually (Figure 1). To accommodate the evolving needs of the research community, SEER-Medicare and other linkages have been expanded and improved over the years, adding, for example, more data about facility and provider characteristics, nursing and home healthcare, and pharmacy-based drug utilization (16). Beyond claims, other SEER-Medicare linkages have been performed with patient surveys including the Consumer Assessment of Healthcare Providers and Systems (17), which measures Medicare patients’ care experiences, and the Medicare Health Outcomes Survey (18), which provides health-related quality-of-life information about Medicare Advantage enrollees. Most recently, a linkage between SEER data and national Medicaid enrollment data (19) has been made available to the research community (20). Figure 1. Open in new tabDownload slide SEER-Medicare data requests and published manuscripts, by year. Figure 1. Open in new tabDownload slide SEER-Medicare data requests and published manuscripts, by year. Another approach has been to leverage the SEER cancer registries as a sampling frame to conduct population-based studies of cancer treatment. For example, the Patterns of Care studies (13) were started in 1987 to evaluate the dissemination of state-of-the-art cancer therapies into community oncology practice. The ongoing Patterns of Care studies focus on 2-3 different cancer sites annually, collecting more detailed treatment data on a subset of SEER cases using medical record verification. They also assess patient-, provider-, and health system–level factors that are associated with the receipt of specific therapies. The 2020 study captured, for the first time, information regarding discussions of the cost of cancer treatment between patients and providers. Finally, population trends in cancer-related healthcare have been assessed through large national surveys. For example, the Cancer Control Supplement to the National Health Interview Survey (10) has been conducted in partnership with the Centers for Disease Control and Prevention since 1987. It allows for nationally representative estimates of cancer screening behaviors, tobacco use and control, and diet and physical activity. Because the supplement is embedded in a self-reported health survey with sociodemographic information, a wide array of analyses are possible to improve understanding of population health. Moreover, these data have been linked to mortality (29), and other data such as Medicare and Medicaid claims (30), to enhance understanding of economic issues, including those related to health disparities. A subset of National Health Interview Survey participants provides the sample for the Medical Expenditure Panel Survey (MEPS). MEPS, sponsored by the Agency for Healthcare Research and Quality, is the only national survey that collects detailed data on healthcare service use and costs. Data are collected from patients and their providers to improve accuracy. The Experiences with Cancer Survivorship Supplement to the MEPS, first fielded in 2011, monitors the individual economic impact of cancer diagnosis and treatment (11,12). The supplement is sponsored by NCI, Centers for Disease Control and Prevention, and Agency for Healthcare Research and Quality in collaboration with other federal and nonfederal partners. It includes questions related to financial hardship, access to medical care, employment, healthcare utilization and expenditures, and informal caregivers. Analyses of MEPS supplement data were among the first to identify the long-term financial implications of cancer treatment on cancer patients and survivors. In addition to MEPS, other national surveys sponsored by DCCPS have been conducted at the provider level and cover topics such as attitudes and practices regarding cancer screening (31) and use of precision medicine, including discussions of costs of care (32). Research Networks While the above data resources have been instrumental in documenting trends in cancer-related healthcare delivery and outcomes over time, all have limitations. For example, measuring cancer screening via national surveys such as the National Health Interview Survey is subject to inaccuracies in respondents’ self-report of the occurrence and timing of screening examinations, and medical claims-based research cannot capture certain aspects of care such as results of screening or laboratory tests or patient-reported symptoms. Therefore, HDRP has also funded research networks that allow for more detailed capture of healthcare data. Although by necessity these networks include a more limited number of healthcare delivery settings and are therefore not as generalizable to the United States (US) population, they serve as an important supplement to national and regional data by providing more granular data than are available at the national level. Networks funded through ARP and HDRP have included the Breast Cancer Surveillance Consortium (22), formed in 1994, which currently comprises 6 breast imaging registries with linkages to cancer registries across the United States that conduct research to improve the quality and outcomes of breast cancer screening. Another example is the Cancer Research Network (23), which was first funded in 1998 as a consortium of integrated healthcare delivery systems and associated research groups with the goal of improving cancer-related care across the continuum, from prevention to screening, treatment, and survivorship care. The Cancer Research Network was a pioneer in the extraction of electronic data from medical records systems for research purposes, developing the Virtual Data Warehouse, based on a set of common data standards that has served as a model for numerous other distributed research networks (33). It also provided a data source for the estimation of cancer care costs in patients younger than 65 years, who are not age eligible for Medicare insurance coverage (34). The development of the Virtual Data Warehouse also made it more efficient for network sites to participate in other NCI-funded research networks such as the Cancer Care Outcomes Research and Surveillance Consortium (24) and Population-based Research to Optimize the Screening Process (25,26), with aims of improving treatment for lung and colorectal cancer and screening for breast, cervical, colorectal, and lung cancer, respectively. These networks have been able to explore a wide range of outcomes including the cost of, access to, and quality of care. Another network developed within SRP, the Cancer Intervention and Surveillance Modeling Network (CISNET), (27) is focused on comparative mathematical simulation modeling to estimate the impact of prevention, screening, and treatment interventions on cancer outcomes. Continuously funded by NCI since 2000, CISNET currently includes 6 cancer sites (breast, cervical, colorectal, lung, prostate, and esophageal) with 3-6 models for each. Simulation allows for the synthesis of the best available data about disease natural history, accuracy of screening and diagnostic tests, and efficacy of interventions to predict the impact of specific screening or treatment regimens on population-level outcomes. Additionally, comparative modeling allows for a better understanding of the degree of certainty surrounding model outputs. Specifically, similar estimates across models suggest more certainty, and disparate results can help pinpoint areas where better data to inform model inputs are needed. One area where CISNET has been very influential in informing policy is through collaborations with the US Preventive Services Task Force. Since 2008 the Task Force has incorporated CISNET modeling into its evidence review and recommendation development process in evaluating cancer screening for breast, colorectal, lung, and cervical cancers. CISNET models were instrumental in the decisions to lower the colorectal cancer screening start age from 50 to 45 years (35) and for modifying lung cancer screening eligibility by reducing both the start age from 55 to 50 years and the number of pack-years of smoking from 30 to 20 (36). A 2021 addition is the CISNET Incubator program, translating CISNET’s model of success to cancer sites for which there has been limited population modeling efforts to date and little to no comparative modeling. This program, with 2-3 models per cancer site, has added gastric, bladder, and uterine cancers and multiple myeloma. Economic modeling (especially cost effectiveness) has played an integral role in CISNET analyses across many cancer sites [eg, the cost-effectiveness of risk-stratified colorectal screening based on polygenic risk (37) and a cost-effectiveness analysis of lung cancer screening in the United States (38)]. A complete list of more than 100 CISNET economic modeling studies (including methodologic investigations) can be found on the network’s website (39). Methods Development, Tools, and Thought Leadership Using the data resources described above and others, DCCPS scientists have developed standardized methods and measures for use by the research community. Economic methods were used to assess the national capacity to meet the demand for screening technologies for breast (40) and colorectal (41) cancer as well as to evaluate costs related to new technologies such as genetic testing for hereditary predisposition to cancer (42,43). DCCPS investigators have also developed methods, tools, and guidance on such topics as using medical claims to assess patient comorbidity burden (44,45) and measurement of health disparities using cancer registry and other data (eg, the Health Disparities Calculator) (46,47). Estimation of the costs of cancer care has been a major focus within SRP and ARP and HDRP, with many efforts over the years to quantify the cost burden of cancer using SEER-Medicare data and methods developed according to phase of care (48-52); one seminal finding of this work was the U-shape of monthly costs between cancer diagnosis and date of death among patients who died of cancer (48). Dissemination of research findings and calling attention to and stimulating research in emerging areas are also key to the mission of HDRP. In addition to the publication of funding announcements to promote grant applications in specific topic areas (53), multiple other approaches are used. Workshops are routinely sponsored by HDRP to focus attention on understudied topics, such as methods for the estimation of healthcare costs (54), as discussed above, and conducting research to measure and intervene on organizational factors that influence cancer-related healthcare delivery (55). HDRP also conducts trainings for the research community, such as workshops on the use of SEER-Medicare data (21) as well as the Multilevel Training Institute, which provides participants with a thorough grounding in conducting multilevel intervention research (56). Lastly, publication of journal supplements and monographs describing the proceedings of workshops and/or methods and measures developed by HDRP continue to support research efforts throughout the United States and beyond; examples of these include topics such as the use of SEER-Medicare data (15,16), healthcare cost estimation (54), comparative studies across health systems (57), outcomes assessment (58), and measures of disparities (47) and racial and ethnic discrimination (59,60) in healthcare. Future Directions Recent years have seen major advances in cancer prevention and control including, for example, development of drugs that target specific mutations and therapies that activate patients’ immune systems to fight cancer. Many of these new therapies are expensive, imposing significant financial burdens on patients at the same time they improve survival. Further, these changes are occurring in a rapidly changing health insurance environment, with patients often expected to bear higher premiums and an increasing share of treatment costs. The financial burden resulting from the combination of expensive therapies in the context of preexisting social inequalities leads to increased health disparities (61). Other recent challenges for cancer prevention and control have come from the major stresses put on the healthcare system by the COVID-19 pandemic and increasing recognition of structural determinants of health, including systemic racism in healthcare. Through a 2020-2021 strategic planning process, the HDRP has identified 3 priority areas to emphasize in the development of our research program in the coming years: health information technology and telehealth, systemic racism in healthcare delivery, and economic and financial issues (9). Findings from the Future of Cancer Health Economics Research Conference, as described in more detail in the other manuscripts in this supplement, will also be incorporated into ongoing planning efforts. Since 1983, HDRP and its predecessors have supported research efforts through both the funding of extramural investigators and development of data and other resources. As the availability of new data, methods, and computing capacity to evaluate cancer-related healthcare delivery expand, we aim to enhance and improve these resources in support of the research community, to further promote the growth of healthcare delivery and health economics research. Funding No funding was received for this commentary. Notes Role of the funder: Not applicable. Disclosures: The authors indicate no conflicts of interest. Author contributions: All authors participated in the conceptualization and writing of this manuscript. Acknowledgements: The authors thank Dr Lindsey Enewold for providing the graph documenting the number of SEER-Medicare data requests and publications by year. Disclaimers: The views expressed here are those of the authors only and do not necessarily reflect the views of the National Cancer Institute or National Institutes of Health. Prior presentation: Some of this content was presented at the 2020 Future of Cancer Health Economics Research virtual conference. Data Availability No new data were generated or analysed in support of this research. References 1 National Cancer Institute. National Cancer Act of 1971. https://www.cancer.gov/about-nci/overview/history/national-cancer-act-1971. Accessed September 22, 2021. 2 Tiwari AK , Roy HK. Progress against cancer (1971-2011): how far have we come? J Intern Med . 2012 ; 271 ( 4 ): 392 – 399 . Google Scholar Crossref Search ADS PubMed WorldCat 3 Kaluzny AD , O’Brien DM. 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This work is written by (a) US Government employee(s) and is in the public domain in the US.

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JNCI MonographsOxford University Press

Published: Jul 5, 2022

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