Online Program

Unlocking the potential of electronic medical records for patient-centered outcomes research – what policies are needed to facilitate clinical and administrative data sharing?

Monday, November 4, 2013 : 11:10 a.m. - 11:30 a.m.

Jason Feldman, MPH, Bureau of Epidemiology, Florida Department of Health, Tallahassee, FL
Yoijie Haung, MD, DrPH, MPH, Bureau of Epidemiology, Florida Department of Health, Tallahassee, FL
Jill Mackinnon, PhD, University of Miami Miller School of Medicine, Florida Cancer Data System, Miami, FL
Monique Hernandez, PhD, University of Miami Miller School of Medicine, Florida Cancer Data System, Miami, FL
David Lee, PhD, Department of Epidemiology & Public Health, University of Miami, Miller School of Medicine - NIOSH Research Group, Miami, FL
Fei Tan, PhD, Mathematical Sciences, Indiana University-Purdue University Indianapolis, Indianapolis, IN
Hong Xiao, PhD, Econominc, Social & Administrative Pharmacy, Florida A&M University, Tallahassee, FL
Background: The Florida Department of Health (FL DOH) and Florida Cancer Data System (FCDS) linked cancer registry data with breast cancer patients' hospital electronic medical records (EMRs). Linking EMRs to cancer registry data enable patient-centered outcomes research. However, technical barriers must be resolved to perform linkages. Methods: The FL DOH partnered with a Florida hospital to link their EMRs for patients diagnosed with and/or treated for breast cancer between 2007 and 2011. Medical ICD-9-CM codes were used to identify patients from EMR data. Hospital staff identified patient treatment profiles, medication orders, discharge reports, and clinicians' notes. EMR data were transmitted through FCDS' Secure File Transfer Protocol and matched with registry data. Pathology and treatment data were processed to remove sensitive elements. Results: Hospital staff identified EMRs from within its network of providers, inpatient and outpatient care units, billing departments, and external pharmacies. These data were processed in a flat file format that the registry could receive and interpret. Data for 11,506 breast cancer patients were matched. Discussion: Incorporating cancer data from EMRs into statewide disease registries is feasible and may be ongoing if hospital leadership makes then a priority and dedicates staff with data linkage expertise. Data linkage policies and procedures are needed to ensure patient confidentiality. Such policies and procedures should: (1) address how patient confidentiality is protected; (2) define the legal obligation for reporting data; (3) define data ownership issues; (4) establish compatibility of data systems within hospital networks and state registries; and (5) ensure secure means of transmission through data sharing agreements.

Learning Areas:

Public health or related laws, regulations, standards, or guidelines
Public health or related organizational policy, standards, or other guidelines
Public health or related research

Learning Objectives:
Discuss the process Florida Department of Health (FL DOH) employed to link hospital electronic medical records (EMRs) to cancer registry data Identify the challenges that exist when obtaining and linking clinical data elements Compare recommended policies discussed during the session intended to guide future linkages between health agencies and hospitals.

Keyword(s): Cancer, Policy/Policy Development

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been conducting secondary data analysis for 16 years.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.