The Florida Cancer Data System - Comparative Effectiveness Research

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    Florida Cancer Data System's Contribution to:

    "Enhancing Cancer Registries for Comparative Effectiveness Research"

    In August 2010, the Florida Department of Health (DOH) received funding for the FCDS to be one of ten central cancer registries in the United States included in a new project titled: "Enhancing Cancer Registries for Comparative Effectiveness Research (CER)." Funded by the Centers for Disease Control and Prevention (CDC) through the American Recovery and Reinvestment Act, the project provides a unique opportunity to expand the current data collection methods of state cancer registries to collect data on biomarkers and more detailed information on systemic treatment regimens/drugs for cancers of the breast, colon, and rectum, and chronic myeloid leukemia diagnosed in 2011.

    What is Comparative Effectiveness Research (CER)?

    The Agency for Healthcare Research and Quality describes CER as:

    "Comparative effectiveness research is designed to inform health-care decisions by providing evidence of effectiveness, benefits, and harms of different treatment options. The evidence is generated from research studies that compare drugs, medical devices, surgeries, or ways to deliver healthcare." 1


    1. "What is Comparative Effectiveness Research?" AHRQ Effective Health Care Program. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services. Accessed on 10/10/2011.

    What other states are involved in the CER project?

    The other CER states are Alaska, California, Colorado, Idaho, Louisiana, New Hampshire, North Carolina, Rhode Island, and Texas.

    How cancer information was collected

    The Florida-based CER project focused on reported cases from a five county catchment area: Miami-Dade, Broward, Palm Beach, Orange, and Hillsborough. Any 2011 diagnosed cases for breast, colon, rectum, and chronic myeloid leukemia were initially reported through traditional sources such as hospitals, radiation centers, ambulatory surgical centers, and pathology laboratories. Reported cases that met the study criteria were reviewed by Quality Control Coordinators who determined which cases needed additional follow back for treatment details. Follow back to patient records involved remote connection to hospital and/or physician practice Electronic Medical Record Systems, facility on-site chart review, or through secure electronic fax of patient treatment flow sheets. For patients who received treatment outside of the hospital, and where referral physicians were listed on patient records, the FCDS coordinate data collection at private treatment facilities.

    Hospital and medical practice staff were not obligated to collect data for the project. The FCDS did require assistance with navigation of hospital/facility EMR systems, access to patient chart information, and contact information for follow-up physicians who practices outside the hospital.

    All CER project activities fell under the existing Florida Department of Health authority to capture and report cancer data. Current Florida statutes exempt DOH and FCDS from HIPPA restrictions as registry activities are in direct line with the legislatively mandated surveillance of cancer. As such, participation from healthcare facilities in the five CER counties was not voluntary. However, FCDS assumed almost all of the data collection responsibilities for the project. Registrars and abstractors provided additional support by prioritizing the reporting of the four CER cancer sites.

    The FCDS established a voluntary data collection incentive program for south Florida hospital cancer registrars to assist with high case volume for Miami-Dade, Broward, and Palm Beach Counties. Registrars paid by the case, or received funding toward educational and/or professional development opportunities.

    Data Collection Targeted Areas

    Data cover five counties: Miami-Dade, Broward, Palm Beach, Hillsborough, and Orange counties. These counties were chosen because the collective county population represents approximately 70% of the Hispanic population in Florida. Table 1: CER Cases by Site and County, 2011

    Data items

    The dataset is based on regularly collected cancer registry data, including patient characteristics, tumor characteristics, and type of treatment received and contains additional data on biomarkers and detailed information on systemic treatment regimens/drugs.

    CER Questions to Be Addressed

    CDC working together with the Agency for Healthcare Research and Quality identified four Comparative Effectiveness Research questions to address through this data collection effort:

    1. 1- Are colorectal cancer patients tested for KRAS and are the results used appropriately to determine treatment? What impact does KRAS testing have on 2-3 year survival among colorectal cancer patients?
    2. 2- Are chronic myeloid leukemia (CML) patients being tested for the BCR-ABL2 gene and receiving appropriate treatment according to those results?
    3. 3- Are women with breast cancer being tested appropriately for HER2, progesterone receptor (PR), and estrogen receptor (ER) status and are they being treated appropriately?
    4. 4- Are rectal cancer patients receiving radiotherapy and what is the timing of radiotherapy? Are disparities apparent in the appropriate neo-adjuvant use of radiotherapy among these patients?

    Additional Resources:

    Data Use Requests:

    Data request for use of the Florida CER dataset can be made through submission of a data request application to the FCDS. More information about the data request process can be found on the FCDS website where a CER-specific data layout can be found.

    The combined national dataset comprised of all participating states will be housed at the National Center for Statistics’ Research Data Center. More information will be provided on when this dataset will be made available.

    For additional questions and inquiries please contact:

    Monique N. Hernandez, PhD
    CER Project Manager
    Florida Cancer Data System

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