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Expansion Research Capability to Study Comparative Effectiveness in Complex Patients, 2007-2010 [Tampa, St. Petersburg, and Clearwater, Florida] (ICPSR 34544) RSS

Principal Investigator(s):

Summary:

Overview

The Florida Department of Health and the Florida Cancer Data System (FCDS) collaborated with a hospital network composed of nine clinical facilities, to capture electronic medical records (EMR) data of patients who were diagnosed with or treated for invasive breast cancer from 2007 to 2010. Certain hospital data elements were available throughout 2006. An additional year of 2011 follow-up data was also available for a subset of patients receiving medication treatment. The purpose of the data capture was to advance patient-centered outcomes research to reduce the morbidity and mortality of cancer and other comorbidities.

A breast cancer pilot study was also conducted from a subset of all transmitted EMR records, consisting of admission records with a principal and/or secondary ICD-9-CM diagnosis between 174.0 and 174.9. The subset dataset was then linked to the central cancer registry using patient social security number, first and last name, and date of birth. Using a deterministic matching algorithm a total of 11,506 unique patients were matched to a patient in the FCDS database, resulting in 12,804 primary tumors and 53,940 unique hospital admission records. While the hospital EMR defined the patient dataset, all registry records for that patient were included in the final breast cancer pilot database, regardless of the reporting hospital or the date of diagnosis. This was to ensure capture of the entire diagnostic and treatment profile for each breast cancer patient.

Data Access

These data are not available from ICPSR. The data contain confidential information that can directly identify a patient. There are also reporting facility data. Therefore, to obtain these data, researchers will need to follow the Florida Cancer Data System data-sharing agreement process, as outlined on the FCDS data sharing request.

Access Notes

  • One or more files in this study are not available for download due to special restrictions; consult the restrictions note to learn more.

    These data are not available from ICPSR. The data contain confidential information that can directly identify a patient. There are also reporting facility data. Therefore, to obtain these data, researchers will need to follow the Florida Cancer Data System data-sharing agreement process, as outlined on the FCDS data sharing request.

Dataset(s)

Dataset
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Study Description

Citation

Huang, Youjie. Expansion Research Capability to Study Comparative Effectiveness in Complex Patients, 2007-2010 [Tampa, St. Petersburg, and Clearwater, Florida]. ICPSR34544-v1. Miami, FL: Florida Cancer Data System, University of Miami Miller School of Medicine/Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributors], 2013-03-05. doi:10.3886/ICPSR34544.v1

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Funding

This study was funded by:

  • United States Department of Health and Human Services. Agency for Healthcare Research and Quality (R24HS19658-01)

Scope of Study

Subject Terms:   biomarkers, biomeasures, body mass index, breast cancer, cancer, health, health insurance, medical records, patients, race, socioeconomic status, treatment, treatment outcome

Smallest Geographic Unit:   Census tract

Geographic Coverage:   Clearwater, Florida, St. Petersburg, Tampa, United States

Time Period:  

  • 2006--2011

Date of Collection:  

  • 2011--2012

Unit of Observation:   individual

Universe:   A total of 11,506 unique patients diagnosed with or treated for breast cancer at a hospital network composed of nine clinical facilities between the years 2007-2010.

Data Types:   administrative records data, clinical data, machine-readable text

Data Collection Notes:

The following sources of data were used to develop the pilot study tables:

The Florida Cancer Data System - Data Acquisition Manual

Florida Agency for Health Care Administration (AHCA) Data Guide

Florida Vital Statistics Annual Report 2011

A query-able data dictionary was created to navigate 26 study tables. The names and a summary of the contents of the study tables are provided below. The data dictionary has corresponding PDF codebooks for each of the 26 tables.

D_AMBULATORY: This table contains 35,633 ambulatory patient electronic health records collected by the Florida Agency for Health Care Administration (AHCA) from 1/02/1997 to 12/30/2011.

D_HOSPITAL_DISCHARGE: This table contains 8,713 patient hospital admissions records collected by the reporting hospital for admissions from 1/07/1995 to 12/30/2009.

D_HOSPITAL_DISCHARGE2011: This table contains 1,067 patient hospital admissions records collected by the reporting hospital for admissions from 1/01/2011 to 12/31/2011.

D_MORTALITY: This table contains 1,984 patient death records maintained by the Florida Department of Health, Office of Vital Statistics for dates between 2/19/1997 to 12/31/2011.

D_PATIENTS_ER_RECORDS2011: This table contains 230 emergency room patient electronic health records collected by the Florida Agency for Health Care Administration (AHCA) from 1/01/2011 to 12/27/2011.

H_BREAST_CANCER_PATIENTS: This table contains 53,922 patient medical chart records collected by the reporting hospital from 12/19/2006 to 12/31/2010.

H_CHARGE_CODES: This table contains 681,528 records for services provided at the reporting hospital which incurred financial charges from 8/21/2004 to 7/07/2011.

H_CHEMO: This table contains 11,051 records for the administration of 26 chemotherapy agents provided to patients at the reporting hospital from 10/22/2009 to 12/30/2011.

H_CHEMO_AGENTS: This table lists 26 chemotherapy agents from within larger medications data tables provided by the reporting hospital.

H_DISCHARGE_INSTRUCTION: This table contains 2,669 records of medical guidance for patients at time of discharge provided by the reporting hospital between 4/05/2010 to 12/30/2010.

H_DISCHARGE_SUMMARY: This table contains 794 summaries of where patients were discharged to and additional care needs provided by the reporting hospital between 9/04/2009 to 12/30/2010.

H_HEIGHT_WEIGHT: This table contains 17,853 records of patient height and weight characteristics provided by the reporting hospital from 6/24/2009 to 7/06/2011.

H_HISTORY_MEDICAL: This table contains 416 records of patient health conditions and previous medical treatment provided by the reporting hospital from 6/24/2009 to 7/06/2011.

H_HISTORY_MEDICAL2: This table contains 7,379 records of tests performed for existing conditions and treatment provided by the reporting hospital from 10/20/2009 to 12/29/2010.

H_HISTORY_OB_GYN: This table contains 778 records of patient obstetrical and gynecological treatment provided by the reporting hospital from 10/26/2009 to 12/28/2010.

H_HISTORY_SURGICAL: This table contains 7,584 records of patient history of surgeries performed and associated medical treatment provided by the reporting hospital from 10/20/2009 to 12/29/2010.

H_MEDICATION_ORDERS: This table contains 1,048,575 records of medications ordered for patients during hospital visits between 10/13/2009 to 7/12/2012.

H_MEDICATIONS_ADMINISTERED: This table contains 238,050 records of medications ordered for patients for bedside clinical administration provided by the reporting hospital between 10/20/2009 to 1/12/2011.

H_PATHOLOGY_LINK: This table contains 3,978 breast specimen records performed by the reporting hospital from 9/30/2009 to 12/30/2010.

H_PHARMACY_ORDERS: This table contains 21,186 records of medications ordered as part of patient treatment provided by the reporting hospital from 10/24/2009 to 3/02/2011.

H_RADIATION: This table contains 17 records of patient radiation treatment data provided by reporting hospital from 11/03/2010 to 8/27/2010.

H_TOBACCO_USE: This table contains 1,827 records of patient smoking history provided by reporting hospital between 8/28/2009 to 12/30/2010.

R_CANCER: This table contains 18,375 records of patient treatment profiles collected by the cancer registry for the lifetime of cancer patients.

R_CANCER_TEXT: This table contains 18,375 records of patient test results and treatment modalities collected by the cancer registry.

R_PATIENT: This table contains 11,506 records of patient demographic data collected by the cancer registry.

STUDY_BIOMARKERS: This table contains 18,375 records of patient biological marker tests for estrogen receptor, progesterone receptor, and Human Epidermal Growth Factor Receptor 2 (HER2).

Methodology

Study Design:  

Data collected for this project came from multiple sources, including: Florida Department of Health, Office of Vital Statistics (DOH), the Florida Cancer Data System (FCDS), the Florida Agency for Health Care Administration (AHCA), and a Florida hospital network composed of nine clinical facilities. Florida DOH and FCDS began receiving these hospital records and processing/linking them with other administrative databases between December 2011 and August, 2012. Under the guidance of Florida DOH, the Florida Cancer Data System is the organizational producer of this pilot study dataset.

The study tables created for this project contain data for 11,506 unique breast cancer patients who were diagnosed and/or treated between 2007-2011 at a partnering Florida hospital. Patient hospital EMRs were linked with Florida cancer registry data. Other administrative databases were linked for updated hospital admissions/discharge records and mortality information from across the state.

The study database consists of hospital records for patient clinical characteristics, health histories, comorbid conditions for which specific treatment modalities are provided, including chemotherapy and radiation, medications orders, as well as the treatment doses administered on specific dates and times. These hospital data also contain clinicians' notes during hospitalizations and at the time of discharge, pathology reports were generated for patient laboratory tests performed. Financial charges for services provided to patients were collected from the hospital billing department.

Other state administrative records merged for these study tables include routinely collected data from the Florida Cancer Data System (FCDS), hospital discharge data and ambulatory records maintained by the Florida Agency for Health Care Administration (AHCA), and mortality data collected by the Florida Department of Health, Office of Vital Statistics.

Pilot study data tables contain discrete and text data which include raw numeric values from hospital medical records, and include clinical notations retained in patient pathology reports and discharge summaries. A subset of all transmitted EMR records were created consisting of admission (event) records with a principal and/or secondary ICD-9-CM diagnosis between 174.0 and 174.9. The subset dataset was then linked to the central cancer registry using patient social security number, first and last name, and date of birth. Hospital discharge data and ambulatory surgical data were collected as routinely collected administrative data. Patient's death information was collected from state death certificate data. United States Census data were used to categorize patient socioeconomic strata.

Sample:   Procedural codes and diagnosis codes were abstracted from patients' medical charts to make up a dataset of female breast cancer patients. Hospital EMR data that consisted of (a) patient demographics, (b) patient diagnostic information, including patient health histories; comorbid conditions; height and weight; and (c) treatment information were captured. The resulting sample of breast cancer patients were predominantly Caucasian, between 20 and 80 years of age. Socioeconomically, these patients reflect the higher-end of the SES spectrum consistent with the location of the participating hospital being in a higher SES area.

Presence of Common Scales:   The ICD-9 (procedure) and Current Procedural Terminology (CPT) coding schemes to identify and match patients who met the breast cancer (2007-2010) criteria were used. By using the data standards issued by the North American Association of Central Cancer Registries (NAACCR), the FCDS and hospital staff identified the most relevant hospital EMR data elements to ensure standard diagnostic and treatment information in the central cancer registry.

Version(s)

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