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.

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.

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.

Surveillance endoscopy does not improve survival for patients with local and regional stage colorectal cancer.

BACKGROUND: Endoscopic surveillance is recommended and widely practiced after definitive treatment for colorectal cancer, yet to the authors' knowledge there is little evidence supporting its benefit. The purpose of the current study was to estimate the impact of endoscopic surveillance on colorectal cancer-specific survival for persons with localized or regional colorectal cancer. The population included Medicare patients (age >or=65 years) who were diagnosed with local or regional stage colorectal cancer between 1986 and 1996. METHODS: The current study was a retrospective case-control study. Cases were defined as those individuals who died of colorectal cancer and controls were defined as those with colorectal cancer who did not die of colorectal cancer; controls were frequency matched to cases. Surveillance was defined as the use of colonoscopy, flexible sigmoidoscopy, or barium enema >or=6 months after diagnosis. Logistic regression was used to control for endoscopic procedure, race, comorbidity index at the time of diagnosis, and types of initial treatments after surgery. RESULTS: The analysis group contained 8130 cases (29%) and 20,079 controls (71%). The average time to first bowel surveillance for those with at least 1 surveillance examination was 15.9 months after the diagnosis (median, 13 months). In the regression analysis, surveillance endoscopy was not found to be associated with improved colorectal cancer-specific survival (odds ratio of 1.01; 95% confidence interval, 0.95-1.06 [P=0.85]). Setting the surveillance interval to 12 months and 15 months rather than 6 months after diagnosis did not appear to influence the results. CONCLUSIONS: Surveillance endoscopy does not appear to influence colorectal cancer-specific mortality in patients age >65 years who are diagnosed with localized or regional stage colorectal cancer.

Insurance status and the use of guideline therapy in the treatment of selected cancers.

PURPOSE: This study estimates the impact of type of insurance coverage on the receipt of guideline therapy in a population-based sample of cancer patients treated in the community. PATIENTS AND METHODS: Patients (n = 7,134) from the National Cancer Institute's Patterns of Care studies who were newly diagnosed with 11 different types of cancer were analyzed. The definition of guideline therapy was based on the National Comprehensive Cancer Network treatment recommendations. Insurance status was categorized as a mutually exclusive hierarchical variable (no insurance, any private insurance, any Medicaid, Medicare only, and all other). Multivariate analyses were used to examine the association between insurance and receipt of guideline therapy. RESULTS: Adjusting for clinical and nonclinical variables, insurance status was a modest, although statistically significant, determinant of receipt of guideline therapy, with 65% of the privately insured patients receiving recommended therapy compared with 60% of patients with Medicaid. Seventy percent of the uninsured patients received guideline therapy, which was nonsignificantly different compared with private insurance. When stratified by race, insurance was a statistically significant predictor of the receipt of guideline therapy only for non-Hispanic blacks. CONCLUSION: Overall, levels of guideline treatment were lower than expected and particularly low for patients with Medicaid or Medicare only. The use of guideline therapy for ovarian and cervical cancer patients and for patients with rectal cancers was unrelated to type of insurance. Of particular concern is the significantly lower use of guideline therapy for non-Hispanic black patients with Medicaid. After adjusting for other factors, only half of these patients received guideline therapy.

Health plan policies and programs for colorectal cancer screening: a national profile.

BACKGROUND: A consensus has emerged that average-risk adults 50 years of age or older should be screened for colorectal cancer (CRC). OBJECTIVES: To describe health plans' coverage policies, guidelines, and organized programs to promote CRC screening. STUDY DESIGN AND METHODS: Review of data from the National Cancer Institute Survey of Colorectal Cancer Screening Practices, administered to a national sample of health plans in 1999-2000. The survey inquired about coverage policies for fecal occult blood testing, sigmoidoscopy, colonoscopy, and double-contrast barium enema; the nature of any guidelines the plan had issued to its providers on CRC screening; and systems for recruiting patients into screening and for tracking and reporting the results of screening and follow-up procedures. RESULTS: Of 346 eligible health plans, 180 (52%) responded. Nearly all health plans covered at least 1 CRC screening modality. Plans were most likely to cover fecal occult blood testing (97%) and least likely to cover colonoscopy (57%). Sixty-five percent had issued guidelines on CRC screening to providers. One quarter had a mechanism to remind patients that they are due for CRC screening, but fewer had systems for prompting providers, contacting noncompliant patients, or tracking completion of screening. CONCLUSIONS: Health plans have the ability to provide organizational infrastructure for a broad range of preventive services to well-defined populations. However, few health plans had all 3 essential CRC screening delivery components--coverage, guidelines, and tracking systems--in place in 1999-2000.

Racial differences in the receipt of bowel surveillance following potentially curative colorectal cancer surgery.

OBJECTIVE: To investigate racial differences in posttreatment bowel surveillance after colorectal cancer surgery in a large population of Medicare patients. DATA SOURCES: We used a large population-based dataset: Surveillance, Epidemiology, and End Results (SEER) linked to Medicare data. STUDY DESIGN: This is a retrospective cohort study. We analyzed data from 44,768 non-Hispanic white, 2,921 black, and 4,416 patients from other racial/ethnic groups, aged 65 and older at diagnosis, who had a diagnosis of local or regional colorectal cancer between 1986 and 1996, and were followed through December 31, 1998. Cox Proportional Hazards models were used to investigate the relation of race and receipt of posttreatment bowel surveillance. DATA COLLECTION: Sociodemographic, hospital, and clinical characteristics were collected at the time of diagnosis for all members of the cohort. Surgery and bowel surveillance with colonoscopy, sigmoidoscopy, and barium enema were obtained from Medicare claims using ICD-9-CM and CPT-4 codes. PRINCIPAL FINDINGS: The chance of surveillance within 18 months of surgery was 57 percent, 48 percent, and 45 percent for non-Hispanic whites, blacks, and others, respectively. After adjusting for sociodemographic, hospital, and clinical characteristics, blacks were 25 percent less likely than whites to receive surveillance if diagnosed between 1991 and 1996 (RR = 0.75, 95 percent CI = 0.70-0.81). CONCLUSIONS: Elderly blacks were less likely than non-Hispanic whites to receive posttreatment bowel surveillance and this result was not explained by measured racial differences in sociodemographic, hospital, and clinical characteristics. More research is needed to explore the influences of patient- and provider-level factors on racial differences in posttreatment bowel surveillance.

Colorectal cancer screening with double-contrast barium enema: a national survey of diagnostic radiologists.

OBJECTIVE: This article describes diagnostic radiologists' colorectal cancer screening activities and beliefs about screening effectiveness and future capacity for screening with double-contrast barium enema, and compares radiologists' opinions about colorectal cancer screening with those of primary care physicians. MATERIALS AND METHODS: We surveyed a nationally representative sample of diagnostic radiologists. Of 381 eligible radiologists, 312 (82%) responded. Descriptive statistics and chi-square tests were used to assess radiologists' opinions about double-contrast barium enema volume and capacity and to compare radiologists' beliefs about colorectal cancer screening with those of primary care physicians. Logistic regression was used to identify characteristics of radiologists who receive referrals for or perform a higher volume of screening double-contrast barium enema and of those who expect the volume of double-contrast barium enemas to increase. RESULTS: Seventy-five percent of radiologists said that double-contrast barium enema is a "very effective" colorectal cancer screening procedure compared with 33% of primary care physicians. Although 86% of radiologists reported performing one or more screening double-contrast barium enema procedures during a typical month, only 27% indicated that they did so 11 or more times. Fifteen percent of radiologists said that their double-contrast barium enema volume had increased over the past 3 years, and 50% expect an increase over the next 3 years. Only 8% said that the capacity of facilities and personnel to meet the demand for double-contrast barium enemas in their geographic area of practice is inadequate. Geographic region and belief in double-contrast barium enema efficacy were predictors of double-contrast barium enema volume and referrals. CONCLUSION: Most diagnostic radiologists perform colorectal cancer screening with double-contrast barium enema, but procedure volumes are modest. Because primary care physicians view double-contrast barium enema less positively than do radiologists, radiologists' expectations for an increased volume of double-contrast barium enemas over the next few years may not be realized.