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

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.

Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the Cancer Research Network.

The Cancer Research Network (CRN) is a consortium of 12 research groups, each affiliated with a nonprofit integrated health care delivery system, that was first funded in 1998. The overall goal of the CRN is to support and facilitate collaborative cancer research within its component delivery systems. This paper describes the CRN's 20-year experience and evolution. The network combined its members' scientific capabilities and data resources to create an infrastructure that has ultimately supported over 275 projects. Insights about the strengths and limitations of electronic health data for research, approaches to optimizing multidisciplinary collaboration, and the role of a health services research infrastructure to complement traditional clinical trials and large observational datasets are described, along with recommendations for other research consortia.

Harms of cervical cancer screening in the United States and the Netherlands.

We studied harms related to cervical cancer screening and management of screen-positive women in the United States (US) and the Netherlands. We utilized data from four US integrated health care systems (SEARCH), the US National Health Interview Survey, New Mexico state, the Netherlands national histopathology registry, and included studies on adverse health effects of cervical screening. We compared the number of Papanicolaou (Pap) smear tests, abnormal test results, punch biopsies, treatments, health problems (anxiety, pain, bleeding and discharge) and preterm births associated with excisional treatments. Results were age-standardized to the 2007 US population. Based on SEARCH, an estimated 36 million Pap tests were performed in 2007 for 91 million US women aged 21-65 years, leading to 2.3 million abnormal Pap tests, 1.5 million punch biopsies, 0.3 million treatments for precancerous lesions, 5 thousand preterm births and over 8 million health problems. Under the Netherlands screening practice, fewer Pap tests (58%), abnormal test results (64%), punch biopsies (75%), treatment procedures (40%), preterm births (60%) and health problems (63%) would have occurred. The SEARCH data did not differ much from other US data for 2007 or from more recent data up to 2013. Thus compared to the less intensive screening practice in the Netherlands, US practice of cervical cancer screening may have resulted in two- to threefold higher harms, while the effects on cervical cancer incidence and mortality are similar. The results are also of high relevance in making recommendations for HPV screening. Systematic collection of harms data is needed for monitoring and for better incorporation of harms in making screening recommendations.

Challenges in meeting Healthy People 2020 objectives for cancer-related preventive services, National Health Interview Survey, 2008 and 2010.

INTRODUCTION: Healthy People (HP) is the US program that formulates and tracks national health objectives for the nation. The National Health Interview Survey (NHIS) is a designated data source for setting and evaluating several HP targets in cancer. We used data from the 2008 and 2010 NHIS to provide a benchmark for national performance toward meeting HP 2020 cancer-related objectives. METHODS: HP 2020 cancer screening, provider counseling, and health care access objectives were selected. For each objective, NHIS measures for the overall population and several sociodemographic subgroups were calculated; the findings were compared with established HP 2020 targets. RESULTS: From 2008 to 2010, rates of breast and cervical cancer screening declined slightly while colorectal cancer screening rates increased by 7 percentage points. Rates of cancer screening and provider counseling were below HP targets. Meeting HP targets seems less likely for subgroups characterized by low income, no health insurance, or no usual source of care. Meeting HP targets for access to health services will require an increase of 18 percentage points in the proportion of persons under age 65 with health insurance coverage and an increase of 10 percentage points in the proportion aged 18 to 64 with a usual source of care. CONCLUSION: Whether HP objectives for cancer screening and health care access are met may depend on implementation of health care reform measures that improve access to and coordination of care. Better integration of clinical health care and community-based efforts for delivering high-quality screening and treatment services and elimination of health disparities are also needed.

Improving the quality of surveys of physicians and medical groups: a research agenda.

Because health care providers have a central role in implementing guidelines, health care reform, and new standards of care and technologies, surveying them about their practices and perspectives is vital for health services and policy research. In November 2010, the National Cancer Institute convened a workshop to review and discuss current methodologies in designing and fielding large-scale surveys of physicians and medical groups. This report summarizes key issues and future directions for four topic areas addressed in the workshop: sample frames for surveying physicians and medical groups; points of contact and response modes; response incentives; and questionnaire design and burden. Recommendations were made for improving sample frame databases, optimizing mixed-mode surveys, and studying use of incentives with gatekeepers and in medical group settings. There is particular need for empirical assessment of factors that motivate or impede participation of physicians, other types of clinicians, and medical groups in survey research.

Cervical cancer screening in the United States and the Netherlands: a tale of two countries.

CONTEXT: This article compares cervical cancer screening intensity and cervical cancer mortality trends in the United States and the Netherlands to illustrate the potential of cross-national comparative studies. We discuss the lessons that can be learned from the comparison as well as the challenges in each country to effective and efficient screening. METHODS: We used nationally representative data sources in the United States and the Netherlands to estimate the number of Pap smears and the cervical cancer mortality rate since 1950. The following questions are addressed: How do differences in intensity of Pap smear use between the countries translate into differences in mortality trends? Can population coverage rates (the proportion of eligible women who had a Pap smear within a specified period) explain the mortality trends better than the total intensity of Pap smear use? FINDINGS: Even though three to four times more Pap smears per woman were conducted in the United States than in the Netherlands over a period of three decades, the two countries' mortality trends were quite similar. The five-year coverage rates for women aged thirty to sixty-four were quite comparable at 80 to 90 percent. Because screening in the Netherlands was limited to ages thirty to sixty, screening rates for women under thirty and over sixty were much higher in the United States. These differences had consequences for age-specific mortality trends. The relatively good coverage rate in the Netherlands can be traced back to a nationwide invitation system based on municipal population registries. While both countries followed a "policy cycle" involving evidence review, surveillance of screening practices and outcomes, clinical guidelines, and reimbursement policies, the components of this cycle were more systematically linked and implemented nationwide in the Netherlands than in the United States. To a large extent, this was facilitated by a public health model of screening in the Netherlands, rather than a medical services model. CONCLUSIONS: Cross-country studies like ours are natural experiments that can produce insights not easily obtained from other types of study. The cervical cancer screening system in the Netherlands seems to have been as effective as the U.S. system but used much less screening. Adequate coverage of the female population at risk seems to be of central importance.

Productivity savings from colorectal cancer prevention and control strategies.

BACKGROUND: Lost productivity represents a considerable portion of the total economic burden of colorectal cancer (CRC), but cost-effectiveness studies of CRC prevention and control have not included these costs and therefore underestimate potential savings from CRC prevention and control. PURPOSE: To use microsimulation modeling study to estimate and project productivity costs of CRC and to model the savings from four approaches to reducing CRC incidence and mortality: risk factor reduction, improved screening, improved treatment, and a simultaneous approach where all three strategies are implemented. METHODS: A model was developed to project productivity losses from CRC using the U.S. population with CRC incidence and mortality projected through the year 2020. Outcome measures were CRC mortality, morbidity, and productivity savings. RESULTS: With 2005 levels in risk factors, screening, and treatment, 48,748 CRC deaths occurred in 2010, amounting to $21 billion of lost productivity. Using prevention and treatment strategies simultaneously, 3586 deaths could have been avoided in 2010, leading to a savings of $1.4 billion. Cumulatively, by 2020, simultaneous strategies that reduce risk factors and increase screening and treatment could result in 101,353 deaths avoided and $33.9 billion in savings in reduced productivity loss. Improved screening rates alone led to nearly $14.7 billion in savings between 2005 and 2020, followed by risk factor reduction ($12.4 billion) and improved treatment ($8.4 billion). CONCLUSIONS: The savings in productivity loss from strategies to reduce CRC incidence and mortality are substantial, providing evidence that CRC prevention and control strategies are likely to be cost-saving.

Projections of the cost of cancer care in the United States: 2010-2020.

BACKGROUND: Current estimates of the costs of cancer care in the United States are based on data from 2003 and earlier. However, incidence, survival, and practice patterns have been changing for the majority of cancers. METHODS: Cancer prevalence was estimated and projected by phase of care (initial year following diagnosis, continuing, and last year of life) and tumor site for 13 cancers in men and 16 cancers in women through 2020. Cancer prevalence was calculated from cancer incidence and survival models estimated from Surveillance, Epidemiology, and End Results (SEER) Program data. Annualized net costs were estimated from recent SEER-Medicare linkage data, which included claims through 2006 among beneficiaries aged 65 years and older with a cancer diagnosis. Control subjects without cancer were identified from a 5% random sample of all Medicare beneficiaries residing in the SEER areas to adjust for expenditures not related to cancer. All cost estimates were adjusted to 2010 dollars. Different scenarios for assumptions about future trends in incidence, survival, and cost were assessed with sensitivity analysis. RESULTS: Assuming constant incidence, survival, and cost, we projected 13.8 and 18.1 million cancer survivors in 2010 and 2020, respectively, with associated costs of cancer care of 124.57 and 157.77 billion 2010 US dollars. This 27% increase in medical costs reflects US population changes only. The largest increases were in the continuing phase of care for prostate cancer (42%) and female breast cancer (32%). Projections of current trends in incidence (declining) and survival (increasing) had small effects on 2020 estimates. However, if costs of care increase annually by 2% in the initial and last year of life phases of care, the total cost in 2020 is projected to be $173 billion, which represents a 39% increase from 2010. CONCLUSIONS: The national cost of cancer care is substantial and expected to increase because of population changes alone. Our findings have implications for policy makers in planning and allocation of resources.

Are physicians' recommendations for colorectal cancer screening guideline-consistent?

BACKGROUND: Many older adults in the U.S. do not receive appropriate colorectal cancer (CRC) screening. Although primary care physicians' recommendations to their patients are central to the screening process, little information is available about their recommendations in relation to guidelines for the menu of CRC screening modalities, including fecal occult blood testing (FOBT), flexible sigmoidoscopy (FS), colonoscopy, and double contrast barium enema (DCBE). The objective of this study was to explore potentially modifiable physician and practice factors associated with guideline-consistent recommendations for the menu of CRC screening modalities. METHODS: We examined data from a nationally representative sample of 1266 physicians in the U.S. surveyed in 2007. The survey included questions about physician and practice characteristics, perceptions about screening, and recommendations for age of initiation and screening interval for FOBT, FS, colonoscopy and DCBE in average risk adults. Physicians' screening recommendations were classified as guideline consistent for all, some, or none of the CRC screening modalities recommended. Analyses used descriptive statistics and polytomous logit regression models. RESULTS: Few (19.1%; 95% CI:16.9%, 21.5%) physicians made guideline-consistent recommendations across all CRC screening modalities that they recommended. In multivariate analysis, younger physician age, board certification, north central geographic region, single specialty or multi-specialty practice type, fewer patients per week, higher number of recommended modalities, use of electronic medical records, greater influence of patient preferences for screening, and published clinical evidence were associated with guideline-consistent screening recommendations (p < 0.05). CONCLUSIONS: Physicians' CRC screening recommendations reflect both overuse and underuse, and few made guideline-consistent CRC screening recommendations across all modalities they recommended. Interventions that focus on potentially modifiable physician and practice factors that influence overuse and underuse and address the menu of recommended screening modalities will be important for improving screening practice.

Inventory of data sources for estimating health care costs in the United States.

OBJECTIVE: To develop an inventory of data sources for estimating health care costs in the United States and provide information to aid researchers in identifying appropriate data sources for their specific research questions. METHODS: We identified data sources for estimating health care costs using 3 approaches: (1) a review of the 18 articles included in this supplement, (2) an evaluation of websites of federal government agencies, non profit foundations, and related societies that support health care research or provide health care services, and (3) a systematic review of the recently published literature. Descriptive information was abstracted from each data source, including sponsor, website, lowest level of data aggregation, type of data source, population included, cross-sectional or longitudinal data capture, source of diagnosis information, and cost of obtaining the data source. Details about the cost elements available in each data source were also abstracted. RESULTS: We identified 88 data sources that can be used to estimate health care costs in the United States. Most data sources were sponsored by government agencies, national or nationally representative, and cross-sectional. About 40% were surveys, followed by administrative or linked administrative data, fee or cost schedules, discharges, and other types of data. Diagnosis information was available in most data sources through procedure or diagnosis codes, self-report, registry, or chart review. Cost elements included inpatient hospitalizations (42.0%), physician and other outpatient services (45.5%), outpatient pharmacy or laboratory (28.4%), out-of-pocket (22.7%), patient time and other direct nonmedical costs (35.2%), and wages (13.6%). About half were freely available for downloading or available for a nominal fee, and the cost of obtaining the remaining data sources varied by the scope of the project. CONCLUSIONS: Available data sources vary in population included, type of data source, scope, and accessibility, and have different strengths and weaknesses for specific research questions.

Comparison of approaches for estimating incidence costs of care for colorectal cancer patients.

BACKGROUND: Estimates of the costs of medical care vary across patient populations, data sources, and methods. The objective of this study was to compare 3 approaches for estimating the incidence costs of colorectal cancer (CRC) care using similar patient populations, but different data sources and methods. METHODS: We used 2 data sources, linked SEER-Medicare and Medicare claims alone, to identify newly diagnosed CRC patients aged 65 and older and estimated their healthcare costs during the observation period, 1998 to 2002. Controls were matched by sex, age-group, and geographic location. We compared mean net costs, measured as the difference in total cost between cases and controls, for: (1) a SEER-Medicare cohort, (2) a Medicare claims alone cohort, and (3) a modeled phase of care approach using linked SEER-Medicare data. The SEER-Medicare cohort approach was considered the reference. RESULTS: We found considerable variability across approaches for estimating net costs of care in CRC patients. In the first year after diagnosis, mean net costs were $32,648 (95% CI: $31,826 and $33,470) in the SEER-Medicare cohort. The other approaches understated mean net costs in year 1 by about 16%. Mean net 5-year costs of care were $37,227 (95% CI: $35,711 and $38,744) in the SEER-Medicare cohort, and $30,310 (95% CI: $25,894 and $34,726) in the claims only approach, with the largest difference in the 65 to 69 age group. Mean net 5-year costs of care were more similar to the reference in the modeled phase of care approach ($37,701 [range: $36,972 and $38,446]). Differences from the SEER-Medicare cohort estimates reflect misclassification of prevalent cancer patients as newly diagnosed patients in the Medicare claims only approach, and differences in years of data and assumptions about comparison groups in the modeled phase of care approach. CONCLUSIONS: CRC incidence cost estimates vary substantially depending on the strategy and data source for identifying newly diagnosed cancer patients and methods for estimating longitudinal costs. Our findings may inform estimation of costs for other cancers as well as other diseases.

Comparison of approaches for estimating prevalence costs of care for cancer patients: what is the impact of data source?

BACKGROUND: National prevalence costs of medical care can be key inputs in health policy decisions. Cost estimates vary across data sources, patient populations, and methods, however, the objective of this study was to compare 3 approaches for estimating the prevalence costs of colorectal cancer (CRC) care using different data sources, but similar patient populations and methods. METHODS: We identified prevalent CRC patients aged 65 and older from: (1) linked Surveillance Epidemiology and End Results (SEER) registry-Medicare data, (2) Medicare claims only, and (3) the Medical Expenditure Panel Survey (MEPS). Controls were matched by sex, age-group, and geographic location. Mean per person total and net costs, measured as the difference between patients and controls, were compared for each approach during a similar observation period. The SEER-Medicare approach was our reference, and we evaluated the impact of patient selection criteria with sensitivity analyses. Aggregate prevalence estimates were also compared. RESULTS: We found considerable variability across the different approaches to estimating prevalence costs of CRC. Mean net annual per person estimates in the SEER-Medicare reference were $5341 (95% CI: $5243, $5439), compared with $8736 (95% CI: $8203, $9269) for the Medicare claims only and $11,614 (95% CI: $7566, $15,663) for the MEPS. Aggregate national estimates of net prevalence costs of CRC in 2004 ranged from $4524 million, using the SEER-Medicare approach, to $9629 million, using the MEPS approach. Estimates varied by data source based on the payors included and identification of prevalent CRC patients. CONCLUSIONS: CRC prevalence cost estimates vary substantially depending on the data sources. Our findings have implications for estimating prevalence costs for other cancers and other diseases without registry systems that can be used to identify newly diagnosed individuals as well as those diagnosed less recently.

Adverse events after outpatient colonoscopy in the Medicare population.

BACKGROUND: Although use of colonoscopy has increased substantially among elderly Medicare beneficiaries, no one has described colonoscopy-related adverse events in a representative sample of Medicare patients. OBJECTIVE: To determine risk for adverse events after outpatient colonoscopy in elderly patients. DESIGN: Population-based, matched cohort study. SETTING: Surveillance, Epidemiology, and End Results cancer registry areas. PATIENTS: Random 5% sample of Medicare beneficiaries, age 66 to 95 years, who underwent outpatient colonoscopy between 1 July 2001 and 31 October 2005 (n = 53 220), matched with beneficiaries who did not have colonoscopy. MEASUREMENTS: Medicare claims were used to measure the rate of serious gastrointestinal events (bleeding and perforation), other gastrointestinal events, and cardiovascular events resulting in a hospitalization or emergency department visit within 30 days after colonoscopy compared with matched beneficiaries who did not have colonoscopy. Logistic regression was used to estimate adjusted predictive risks for adverse events and to assess whether these events varied by age, comorbid conditions, or type of colonoscopy. RESULTS: Persons undergoing colonoscopy had a higher risk for adverse gastrointestinal events than their matched group. Rates of adverse events after colonoscopy increased with age. Patients having polypectomy had higher risk for all adverse events compared with their matched group and with the screening and diagnostic colonoscopy groups. Comorbid conditions increased the risk for adverse events. Patients with a history of stroke, chronic obstructive pulmonary disease, atrial fibrillation, or congestive heart failure had significantly higher risk for serious gastrointestinal events. LIMITATION: The analysis relied on the diagnosis and procedure codes recorded on the Medicare claims. CONCLUSION: Risks for adverse events after outpatient colonoscopy among elderly Medicare beneficiaries were low; however, they increased with age with specific comorbid conditions and depending on whether polypectomy was done. These data may inform decisions on whether to perform colonoscopy in persons of advanced age or those with comorbid conditions.

Trends in colorectal cancer test use in the medicare population, 1998-2005.

BACKGROUND: Colorectal cancer (CRC) screening has been covered under the Medicare program since 1998. No prior study has addressed the question of the completeness of CRC screening in the entire Medicare cohort. METHODS: In 2008, CRC test-use rates were analyzed for the national fee-for-service Medicare population using Medicare enrollment and claims data from 1998 through 2005. Annual test-use rates were calculated for fecal occult blood testing, sigmoidoscopy, barium enema, and colonoscopy for each year by the demographic characteristics of enrollees. A current-in-Medicare rate was calculated to assess the percentage of enrollees with CRC testing according to recommended intervals. RESULTS: Colonoscopy rates have increased every year since the introduction of CRC screening coverage. Test-use rates for all other test modalities have steadily decreased. The percentage of Medicare enrollees receiving appropriate tests has slowly increased. In 2005, 47% of enrollees aged >or=65 years and 33% of enrollees aged 50-64 years had claims indicating that they had been tested according to recommended intervals. CONCLUSIONS: CRC test-use rates in the Medicare population are low. Disparities are apparent by age, race/ethnicity, gender, disability, income, and geographic residence. Much work remains to be done to increase testing to acceptable levels.

A health services research agenda for cellular, molecular and genomic technologies in cancer care.

BACKGROUND: In recent decades, extensive resources have been invested to develop cellular, molecular and genomic technologies with clinical applications that span the continuum of cancer care. METHODS: In December 2006, the National Cancer Institute sponsored the first workshop to uniquely examine the state of health services research on cancer-related cellular, molecular and genomic technologies and identify challenges and priorities for expanding the evidence base on their effectiveness in routine care. RESULTS: This article summarizes the workshop outcomes, which included development of a comprehensive research agenda that incorporates health and safety endpoints, utilization patterns, patient and provider preferences, quality of care and access, disparities, economics and decision modeling, trends in cancer outcomes, and health-related quality of life among target populations. CONCLUSIONS: Ultimately, the successful adoption of useful technologies will depend on understanding and influencing the patient, provider, health care system and societal factors that contribute to their uptake and effectiveness in 'real-world' settings.

Estimates and projections of value of life lost from cancer deaths in the United States.

BACKGROUND: Value-of-life methods are increasingly used in policy analyses of the economic burden of disease. The purpose of this study was to estimate and project the value of life lost from cancer deaths in the United States. METHODS: We estimated and projected US age-specific mortality rates for all cancers and for 16 types of cancer in men and 18 cancers in women in the years 2000-2020 and applied them to US population projections to estimate the number of deaths in each year. Cohort life tables were used to calculate the remaining life expectancy in the absence of cancer deaths-the person-years of life lost (PYLL). We used a willingness-to-pay approach in which the value of life lost due to cancer death was calculated by multiplying PYLL by an estimate of the value of 1 year of life ($150,000). We performed sensitivity analyses for female breast, colorectal, lung, and prostate cancers using varying assumptions about future cancer mortality rates through the year 2020. RESULTS: The value of life lost from all cancer deaths in the year 2000 was $960.6 billion; lung cancer alone represented more than 25% of this value. Projections for the year 2020 with current cancer mortality rates showed a 53% increase in the total value of life lost ($1472.5 billion). Projected annual decreases of cancer mortality rates of 2% reduced the expected value of life lost in the year 2020 from $121.0 billion to $80.7 billion for breast cancer, $140.1 billion to $93.5 billion for colorectal cancer, from $433.4 billion to $289.4 billion for lung cancer, and from $58.4 billion to $39.0 billion for prostate cancer. CONCLUSIONS: Estimated value of life lost due to cancer deaths in the United States is substantial and expected to increase dramatically, even if mortality rates remain constant, because of expected population changes. These estimates and projections may help target investments in cancer control strategies to tumor sites that are likely to result in the greatest burden of disease and to interventions that are the most cost-effective.

Productivity costs of cancer mortality in the United States: 2000-2020.

BACKGROUND: A model that predicts the economic benefit of reduced cancer mortality provides critical information for allocating scarce resources to the interventions with the greatest benefits. METHODS: We developed models using the human capital approach, which relies on earnings as a measure of productivity, to estimate the value of productivity lost as a result of cancer mortality. The base model aggregated age- and sex-specific data from four primary sources: 1) the US Bureau of the Census, 2) US death certificate data for 1999-2003, 3) cohort life tables from the Berkeley Mortality Database for 1900-2000, and 4) the Bureau of Labor Statistics Current Population Survey. In a model that included costs of caregiving and household work, data from the National Human Activity Pattern Survey and the Caregiving in the U.S. study were used. Sensitivity analyses were performed using six types of cancer assuming a 1% decline in cancer mortality rates. The values of forgone earnings for employed individuals and imputed forgone earnings for informal caregiving were then estimated for the years 2000-2020. RESULTS: The annual productivity cost from cancer mortality in the base model was approximately $115.8 billion in 2000; the projected value was $147.6 billion for 2020. Death from lung cancer accounted for more than 27% of productivity costs. A 1% annual reduction in lung, colorectal, breast, leukemia, pancreatic, and brain cancer mortality lowered productivity costs by $814 million per year. Including imputed earnings lost due to caregiving and household activity increased the base model total productivity cost to $232.4 billion in 2000 and to $308 billion in 2020. CONCLUSIONS: Investments in programs that target the cancers with high incidence and/or cancers that occur in younger, working-age individuals are likely to yield the greatest reductions in productivity losses to society.