Project Title

Expansion Research Capability to Study Comparative Effectiveness in Complex Patients

Publication Date



Purpose: To link central cancer registry data to hospital EMR data for patient outcomes research on complex patients; to develop methods for data retrieval, transmission, and linkage, and to conduct pilot studies using a more robust patient data set.

Scope: Current central cancer registry data, even when linked to other administrative datasets, provide incomplete information to determine treatment efficacy, treatment complications, and overall quality of care. EMR has been implemented in many hospitals. However, no study has explore the methods to link EMR with central cancer registry data.

Methods: Electronic medical records of cancer patients in 2007-2010 from a large health care system were extracted and transmitted to Florida Cancer Data System (FCDS). Data linkages to the FCDS database were performed to provide corresponding patient demographic, tumor, mortality, pathology, and comorbidity data. All linked tables were processed into a relational database for research on patient outcomes and treatment efficacy.

Results: A total of 253,570 encounter records were transmitted to the FCDS from the hospital EMR system. Patient data included detailed treatment such as chemotherapy agents and dosages, radiation modalities, surgical procedures, history and physical reports, smoking status, height and weight, pathology reports, discharge summary reports, and administered medications. Records of invasive breast cancer were subset for targeted research questions. A total of 12,804 breast tumors were linked to 11,504 unique patients in the central cancer registry. Some patients had a history of more than one breast tumor. The data were used for studies on hospital readmissions and length of hospital stay, the outcomes of patients with triple negative biomarkers, the role of BMI as a predictor of prognosis.

EHR/EMR System or Vendor

EMRs from several hospitals in Florida

Healthcare Settings

Primary care or ambulatory clinics, Inpatient facilities

Data Types

Electronic Health/Medical Records (EHR or EMR)

Geographic scope type


Locations of Focus

The network of a hospital system composed of 10 clinical facilities located in the urban centers of Tampa, St. Petersburg, and Clearwater, Florida.

Population Network Size

A total of 11,506 unique patients diagnosed with or treated for breast cancer at a hospital system between the years 2007-2010 are included in this project.

Major Partners

Agency for Health Care Administration (AHCA) provided hospital discharge data and ambulatory surgical data. Dr. Christopher Sullivan participated in development of the research proposal and the research team. University of Miami, Miller School of Medicine (UM). The UM team consisted of Jill A. MacKinnon, PhD, CTR, Monique Hernandez, PhD, and David J. Lee, PhD. The UM team operated the FCDS, linked the hospital EMR and FCDS data, and conducted the pilot research studies; BayCare Health Systems (BayCare) that operates 11 in-patient facilities in Hillsborough and Pinellas counties, Florida. The team consisted of Dr. Denise Remus, Bob Fulenwider, and Ann Davis. BayCare team provided EMR data; Florida Agricultural and Mechanical University (FAMU). Hong Xiao, PhD and her two Graduate Assistants (Askfal Ali and Adunlin George). FAMU teams was responsible for data documentation and coordination of the pilot studies.

CER/PCOR Study Priority Populations

Low-income groups, Minority groups, Women, The elderly, Individuals with disabilities, Individuals who need chronic care, Individuals who live in inner-city areas, Arthritis and nontraumatic joint disorders (Muscle, bone, and joint conditions), Cancer, Cardiovascular disease, including stroke and hypertension (Heart and blood vessel conditions), Diabetes mellitus (Diabetes)

Treatment Comparators

Detailed demographic, tumor characteristics, co-morbidity, and treatment information.

Outcome(s) of Interest

A database was developed with a total of 11,506 unique patients diagnosed with or treated for breast cancer at a BayCare hospital facility between the years 2007-2010. The format of data follows the data standards issued by the North American Association of Central Cancer Registries (NAACCR).

Suggested Reading

Cancer Registry Enrichment via Linkage with Hospital-Based Electronic Medical Records: A Pilot Investigation Journal of Registry Management 2013 Volume 40 Number 1: 37-44

Acknowledgement of Funders

This project was supported by grant number R24HS019658 from the Agency for Healthcare Research and Quality.