Cancer Registry Enrichment via Linkage with Hospital-Based Electronic Medical Records: A Pilot Investigation.

Background: Hospital electronic medical record (EMR) systems are becoming increasingly integrated for management of patient data, especially given recent policy changes issued by the Centers for Medicaid and Medicare Services. In addition to data management, these data provide evidence for patient-centered outcomes research for a range of diseases, including cancer. Integrating EMR patient data with existing disease registries strengthens all essential components for assuring optimal health outcomes. Objectives: To identify the mechanisms for extracting, linking, and processing hospital EMR data with the Florida Cancer Data System (FCDS); and to assess the completeness of existing registry treatment data as well as the potential for data enhancement. Methods: A partnership among the Florida Department of Health, FCDS, and a large Florida hospital system was established to develop methods for hospital EMR extraction and transmission. Records for admission years between 2007 and 2010 were extracted using ICD-9-CM codes as the trigger and were linked with the cancer registry for patients with invasive cancers of the breast. Results: A total of 11,506 unique patients were linked with a total of 12,804 unique breast tumors. Evaluation of existing registry treatment data against the hospital EMR produced a total of 5% of registry records with updated surgery information, 1% of records with updated radiation information, and 7% of records updated with chemotherapy information. Enhancement of registry treatment information was particularly affected by the availability of chemotherapy medications data. Conclusion: Hospital EMR linkages to cancer disease registries is feasible but challenged by lack of standards for data collection, coding and transmission, comprehensive description of available data, and the exclusion of certain hospital datasets. The FCDS standard treatment data variables are highly robust and complete but can be enhanced by the addition of detailed chemotherapy regimens that are commonly used in patient centered outcomes research.

Cancer risk among career male and female Florida firefighters: Evidence from the Florida Firefighter Cancer Registry (1981-2014).

BACKGROUND: Firefighters are at increased risk for select cancers. However, many studies are limited by relatively small samples, with virtually no data on the cancer experience of female firefighters. This study examines cancer risk in over 100,000 career Florida firefighters including 5000 + females assessed over a 34-year period. METHODS: Florida firefighter employment records (n = 109 009) were linked with Florida Cancer Data System registry data (1981-2014; ~3.3 million records), identifying 3760 male and 168 female-linked primary cancers. Gender-specific age and calendar year-adjusted odds ratios (aOR) and 95% confidence intervals for firefighters vs non-firefighters were calculated. RESULTS: Male firefighters were at increased risk of melanoma (aOR = 1.56; 1.39-1.76), prostate (1.36; 1.27-1.46), testicular (1.66; 1.34-2.06), thyroid (2.17; 1.78-2.66) and late-stage colon cancer (1.19;1.00-1.41). Female firefighters showed significantly elevated risk of brain (2.54; 1.19-5.42) and thyroid (2.42; 1.56-3.74) cancers and an elevated risk of melanoma that approached statistical significance (1.68; 0.97-2.90). Among male firefighters there was additional evidence of increased cancer risk younger than the age of 50 vs 50 years and older for thyroid (2.55; 1.96-3.31 vs 1.69; 1.22-2.34), prostate (1.88; 1.49-2.36 vs 1.36; 1.26-1.47), testicular (1.60; 1.28-2.01 vs 1.47; 0.73-2.94), and melanoma (1.87; 1.55-2.26 vs 1.42; 1.22-1.66) cancers. CONCLUSION: Male career firefighters in Florida are at increased risk for five cancers with typically stronger associations in those diagnosed younger than the age of 50, while there was evidence for increased thyroid and brain cancer, and possibly melanoma risk in female firefighters. Larger cohorts with adequate female representation, along with the collection of well-characterized exposure histories, are needed to more precisely examine cancer risk in this occupational group.

Availability and accuracy of occupation in cancer registry data among Florida firefighters.

OBJECTIVES: Occupational exposures significantly contribute to the risk of adverse cancer outcomes, and firefighters face many carcinogenic exposures. Occupational research using cancer registry data, however, is limited by missing and inaccurate occupation-related fields. The objective of this study is to determine the frequency and predictors of missing and inaccurate occupation data for a cohort of career firefighters in a state cancer registry. METHODS: We conducted a linkage between data from the Florida Cancer Data System (1981-2014) and the Florida State Fire Marshal's Office (1972-2012). The percentage and the odds of having a firefighting-related occupation code in the cancer record were calculated, adjusting for other occupation and cancer-related factors. RESULTS: Among 3,928 career firefighters, nearly half (47%) were missing a registry-dervived occupation code and only 17% had a firefighting-related code. Males were more likely to have a firefighting-related code (OR = 2.31;95%CI: 1.41-3.76), as were those with more recent diagnoses (OR1992-2002 = 2.98;95%CI: 1.57-5.67; OR2003-2014 = 11.40;95%CI: 6.17-21.03), and those of younger ages (OR45-64y = 1.26;95%CI: 1.03-1.54; OR20-44y = 2.26;95%CI: 1.73-2.95). CONCLUSIONS: Accurate occupation data is key for identifying increased risk of advserse cancer outcomes. Cancer registry occupation fields, however, are overwhelmingly missing for firefighters and are missing disproportionally by sociodemographic and diagnosis characteristics. This study highlights the lack of accurate occupation data available for hypothesis-driven cancer research. Cancer registry linkage with external occupational data sources represents an essential resource for conducting studies among at-risk populations such as firefighters.

Linking the National Health Interview Survey with the Florida Cancer Data System: A Pilot Study.

Cancer registry data are vital for the surveillance of cancer trends, but registries are limited in the number of data items that can be collected for hypothesis-driven research. Linkage with other databases can add valuable information and is a potentially effective tool for increasing our understanding of and identifying the causes of cancer and health disparities along the cancer continuum. We conducted a pilot study to link data from the 1981-2010 Florida Cancer Data System (FCDS) with data from the 1986-2009 National Health Interview Survey (NHIS). The NHIS data contain important information on sociodemographics, screening behaviors, comorbidities, risk factors, health care access, and quality of life, which are not available from FCDS. The linkage resulted in a total of 6,281 linked cases. After removing cases with a first cancer diagnosis before 1981 (prior to FCDS creation) or missing date of diagnosis information, there were 1,908 cases diagnosed with cancer prior to their NHIS interview and 4,367 cases diagnosed after their NHIS interview. The enriched data set resulting from the linkage allows us to evaluate risk factors associated with developing cancer as well as conduct analyses on cancer survivorship issues and mortality. This pilot study demonstrates the feasibility and utility of a linkage between cancer registries and national health surveys, while also acknowledging the cost and challenges associated with such linkages.

Linkage of 1986-2009 National Health Interview Survey with 1981-2010 Florida Cancer Data System.

BACKGROUND: National survey data linked with state cancer registry data has the potential to create a valuable tool for cancer prevention and control research. A pilot project-developed in a collaboration of the Centers for Disease Control and Prevention's National Center for Health Statistics (NCHS) and the Florida Cancer Data System (FCDS) at the University of Miami -links the records of the 1986-2009 National Health Interview Survey (NHIS) and the 1981-2010 FCDS. The project assesses the feasibility of performing a record linkage between NCHS survey data and a state-based cancer registry, as well as the value of the data produced. The linked NHIS-FCDS data allow researchers to follow NHIS survey participants longitudinally to examine factors associated with future cancer diagnosis, and to assess the characteristics and quality of life among cancer survivors. METHODS: This report provides a preliminary evaluation of the linked national and state cancer data and examines both analytic issues and complications presented by the linkage. CONCLUSIONS: Residential mobility and the number of years of data linked in this project create some analytic challenges and limitations for the types of analyses that can be conducted. However, the linked data set offers the ability to conduct analyses not possible with either data set alone.

Using the National Death Index to identify duplicate cancer incident cases in Florida and New York, 1996-2005.

INTRODUCTION: Cancer registries link incidence data to state death certificates to update vital status and identify missing cases; they also link these data to the National Death Index (NDI) to update vital status among patients who leave the state after their diagnosis. This study explored the use of information from NDI linkages to identify potential duplicate cancer cases registered in both Florida and New York. METHODS: The Florida Cancer Data System (FCDS) and the New York State Cancer Registry (NYSCR) linked incidence data with state and NDI death records from 1996 through 2005. Information for patients whose death occurred in the reciprocal state (the death state) was exchanged. Potential duplicate cases were those that had the same diagnosis and the same or similar diagnosis date. RESULTS: NDI identified 4,657 FCDS cancer patients who died in New York and 2,740 NYSCR cancer patients who died in Florida. Matching identified 5,030 cases registered in both states; 508 were death certificate-only (DCO) cases in the death state's registry, and 3,760 (74.8%) were potential duplicates. Among FCDS and NYSCR patients who died and were registered in the registry of the reciprocal state, more than 50% were registered with the same cancer diagnosis, and approximately 80% had similar diagnosis dates (within 1 year). CONCLUSION: NDI identified DCO cases in the death state's cancer registry and a large proportion of potential duplicate cases. Standards are needed for assigning primary residence when multiple registries report the same case. The registry initiating the NDI linkage should consider sharing relevant information with death state registries so that these registries can remove erroneous DCO cases from their databases.

Enhancing central cancer registry treatment data using physician medical claims: a Florida pilot project.

BACKGROUND: To capture the complete first course of therapy and cancer incidence, given the shift in cancer care from the hospital to the private physician practice, central cancer registries (CCRs) in the United States are actively pursuing cancer reporting from ambulatory providers. The 837 medical health claim is a national standard which CCRs can use to capture and translate data into standardized cancer reporting for surveillance. METHODS: The Florida Cancer Data System conducted a pilot project with a large medical oncology practice to transmit electronic claims from 2011 to 2013. Using the logic and platform developed under a previous National Cancer Institute (NCI) contract, claims were consolidated and translated into standardized cancer registry codes. Consolidated physician claims were compared against gold standard data from the practice electronic health record (EHR) and evaluated for enhancement to registry data. RESULTS: A total of 623 patient tumor cases were collected from the practice EHR and matched to the physician claims data, and to the original cancer registry record. The claims captured 256 cases (41 percent) with chemotherapy, compared to 28 percent in the registry data set, and 45 percent in the gold standard EHR data set. Combining physician claims with registry data produced 280 cases (45 percent) with chemotherapy. The physician claims plus the registry cancer chemotherapy treatment data produced 92 percent agreement, 92 percent sensitivity, and 91 percent positive predictive value. Claims added 103 cases, or 16.5 percent, to the total chemotherapy received. CONCLUSIONS: Physician medical claims data capture chemotherapy information not otherwise reported by hospitals, and is a standardized and efficient mechanism for cancer reporting.

High rate of uncaptured myelodysplastic syndrome cases and an improved method of case ascertainment.

The myelodysplastic syndromes (MDS) are often diagnosed in outpatient clinics and may be under-reported to state cancer registries, which predominantly rely on hospital records and laboratory reports. We used a new method of cancer case capture to determine the rate of missed cases and estimate a more accurate incidence of MDS. Using a unique keyword algorithm, we queried all electronic pathology (E-path) reports sent to the state of Florida cancer registry in 2006 to identify potential MDS cases. A stratified, random sample of E-path reports was then reviewed to confirm diagnosis and assign MDS subtype. Characteristics were compared between captured and uncaptured MDS cases. 7111 E-path reports with MDS keyword hits were identified, of which only 18% linked to a registered MDS case, 47% linked to a different cancer, and 34% did not link with any record. Case review of a stratified, random sampling of 285 individuals led to the discovery that uncaptured cases made up 37.7% of the total true MDS cases in 2006. It is estimated that the true incidence of MDS is 5.3 individuals out of 100,000, compared to previous reports of 3.3 out of 100,000. Uncaptured MDS cases were younger and more likely to have information in the pathology report facilitating MDS subtype assignment. Only two-thirds of true MDS cases are captured in Florida using current case-finding mechanisms. Application of a keyword search strategy to identify cases among E-path reports is a feasible technique to improve MDS case ascertainment.

Cancer registry enrichment via linkage with hospital-based electronic medical records: a pilot investigation.

BACKGROUND: Hospital electronic medical record (EMR) systems are becoming increasingly integrated for management of patient data, especially given recent policy changes issued by the Centers for Medicaid and Medicare Services. In addition to data management, these data provide evidence for patient-centered outcomes research for a range of diseases, including cancer. Integrating EMR patient data with existing disease registries strengthens all essential components for assuring optimal health outcomes. OBJECTIVES: To identify the mechanisms for extracting, linking, and processing hospital EMR data with the Florida Cancer Data System (FCDS); and to assess the completeness of existing registry treatment data as well as the potential for data enhancement. METHODS: A partnership among the Florida Department of Health, FCDS, and a large Florida hospital system was established to develop methods for hospital EMR extraction and transmission. Records for admission years between 2007 and 2010 were extracted using ICD-9-CM codes as the trigger and were linked with the cancer registry for patients with invasive cancers of the breast. RESULTS: A total of 11,506 unique patients were linked with a total of 12,804 unique breast tumors. Evaluation of existing registry treatment data against the hospital EMR produced a total of 5 percent of registry records with updated surgery information, 1 percent of records with updated radiation information, and 7 percent of records updated with chemotherapy information. Enhancement of registry treatment information was particularly affected by the availability of chemotherapy medications data. CONCLUSION: Hospital EMR linkages to cancer disease registries is feasible but challenged by lack of standards for data collection, coding and transmission, comprehensive description of available data, and the exclusion of certain hospital datasets. The FCDS standard treatment data variables are highly robust and complete but can be enhanced by the addition of detailed chemotherapy regimens that are commonly used in patient centered outcomes research.

Pancreatic cancer clusters and arsenic-contaminated drinking water wells in Florida.

BACKGROUND: We sought to identify high-risk areas of pancreatic cancer incidence, and determine if clusters of persons diagnosed with pancreatic cancer were more likely to be located near arsenic-contaminated drinking water wells. METHODS: A total of 5,707 arsenic samples were collected from December 2000 to May 2008 by the Florida Department of Health, representing more than 5,000 individual privately owned wells. During that period, 0.010 ppm (10 ppb) or greater arsenic levels in private well water were considered as the threshold based on standard of United States Environmental Protection Agency (EPA). Spatial modeling was applied to pancreatic cancer cases diagnosed between 1998-2002 in Florida (n = 11,405). Multivariable logistic regression was used to determine if sociodemographic indicators, smoking history, and proximity to arsenic-contaminated well sites were associated with residence at the time of pancreatic cancer diagnosis occurring within versus outside a cluster. RESULTS: Spatial modeling identified 16 clusters in which 22.6% of all pancreatic cancer cases were located. Cases living within 1 mile of known arsenic-contaminated wells were significantly more likely to be diagnosed within a cluster of pancreatic cancers relative to cases living more than 3 miles from known sites (odds ratio = 2.1 [95% CI = 1.9, 2.4]). CONCLUSIONS: Exposure to arsenic-contaminated drinking water wells may be associated with an increased risk of pancreatic cancer. However, case-control studies are needed in order to confirm the findings of this ecological analysis. These cluster areas may be appropriate to evaluate pancreatic cancer risk factors, and to perform targeted screening and prevention studies.

Do all patients with carcinoma of the esophagus benefit from treatment at teaching facilities?

BACKGROUND: We sought to determine whether patients with esophageal carcinoma benefit from regionalization of care. METHODS: The Florida Cancer Data System (FCDS) and the Agency for Health Care Administration data sets (1998-2002) were merged and queried. RESULTS: A total of 5,041 patients (87.6% Caucasian vs. 11.1% African American (AA)) demonstrated a median survival time of 9.8 months overall and 23.4 months following surgical resection (P < 0.001). Adenocarcinoma arose predominantly in Caucasian patients (98.1%). Patients with adenocarcinoma (n = 2,248) derived a treatment benefit at a TF (HR = 1.35, P = 0.003), including an improved 90-day mortality following surgery (2.1% vs. 4.0%, P < 0.001). Squamous cell carcinoma (SCC) arose predominantly in AA patients (91.6%). No overall survival benefit at TF was observed (HR = 1.01, P = 0.915), however a trend for reduced 90-day surgical mortality was observed at TF (1.9% vs. 5.2%, P = 0.062). Multivariate analysis for adenocarcinoma demonstrates that poverty, lack of chemotherapy or surgery, and failure to provide treatment at a TF are independent predictors of worse survival. For SCC patients, AA race was a significant predictor of poorer survival while TF and poverty level were not. CONCLUSIONS: These data suggest no benefit from potential regionalized care for patients with squamous histology, which disproportionately affects AA.

Bladder cancer clusters in Florida: identifying populations at risk.

PURPOSE: Modifiable risk factors for bladder cancer have been identified, ie tobacco and chemical exposure. We identified high risk bladder cancer areas and risk factors associated with bladder cancer clusters in Florida using individual and area based data. MATERIALS AND METHODS: Spatial modeling was applied to 23,266 early and advanced bladder cancer cases diagnosed between 1998 and 2002 in Florida to identify areas of excess bladder cancer risk. Multivariable regression was used to determine whether sociodemographic indicators, smoking history and proximity to known arsenic contaminated drinking water well sites were associated with bladder cancer diagnosis in a specific area (cluster). RESULTS: A total of 25 clusters were found to have a higher than expected bladder cancer rate, including 13 and 12 of early and late stage disease, respectively. Urban white patients were more likely to live in an advanced bladder cancer cluster. Advanced bladder cancer cluster membership was associated with living in close proximity to known arsenic contaminated drinking water wells. CONCLUSIONS: There are multiple areas of early and late stage bladder cancer clusters in Florida. Individuals in an advanced bladder cancer cluster tended to live close to arsenic contaminated wells. Increased evaluation of potentially contaminated well water is warranted in these high risk areas. Targeted bladder cancer public awareness campaigns, smoking cessation support and potentially targeted screening should also be considered in communities at increased risk for bladder cancer. Our analytical approach can also be used by others to systematically identify communities at high risk for bladder and other cancers.

Florida bladder cancer trends 1981 to 2004: minimal progress in decreasing advanced disease.

PURPOSE: There are no accepted screening recommendations for bladder cancer, although the greatest risk factors for bladder cancer are identifiable and modifiable, ie tobacco exposure. Bladder cancer survival correlates highly with disease stage. We ascertained whether there have been any demographic changes in the stage at presentation and mortality of bladder cancer in Florida during the last 25 years. MATERIALS AND METHODS: Data from Florida Cancer Data Registry were evaluated on all bladder cancer cases between 1981 and 2004. Cases were coded and analyzed as local, in situ or advanced (regional and distant) disease. Cases were stratified by demographic groups. RESULTS: The overall incidence of bladder cancer decreased slightly in the last 25 years from 24.3 to 20.5 cases per 100,000 population. Overall white and Hispanic males had an almost 3 and 2-fold incidence of bladder cancer, respectively, compared to that in black males. White females had an almost 2-fold increased incidence compared to black and Hispanic females. Advanced stage bladder cancer decreased minimally in the 25 years. White and black females had the smallest decrease in the annual percent change of advanced bladder cancer. There was only a minimal decrease in bladder cancer mortality rates in black and white but not Hispanic individuals. CONCLUSIONS: Despite knowledge of the main risk factors for bladder cancer there were only small decreases in the percent of patients presenting with advanced disease in Florida in the last 25 years. Thus, bladder cancer may be an appropriate cancer for increased public awareness campaigns and potentially targeted screening of high risk populations.