title: Electronic medical record integration with a database for adult congenital heart disease: Early experience and progress in automating multicenter data collection.
abstract: BACKGROUND
  The adoption of electronic health records (EHR) has created an opportunity for multicenter data collection, yet the feasibility and reliability of this methodology is unknown. The aim of this study was to integrate EHR data into a homogeneous central repository specifically addressing the field of adult congenital heart disease (ACHD).
  
  
  METHODS
  Target data variables were proposed and prioritized by consensus of investigators at five target ACHD programs. Database analysts determined which variables were available within their institutions' EHR and stratified their accessibility, and results were compared between centers. Data for patients seen in a single calendar year were extracted to a uniform database and subsequently consolidated.
  
  
  RESULTS
  From 415 proposed target variables, only 28 were available in discrete formats at all centers. For variables of highest priority, 16/28 (57%) were available at all four sites, but only 11% for those of high priority. Integration was neither simple nor straightforward. Coding schemes in use for congenital heart diagnoses varied and would require additional user input for accurate mapping. There was considerable variability in procedure reporting formats and medication schemes, often with center-specific modifications. Despite the challenges, the final acquisition included limited data on 2161 patients, and allowed for population analysis of race/ethnicity, defect complexity, and body morphometrics.
  
  
  CONCLUSIONS
  Large-scale multicenter automated data acquisition from EHRs is feasible yet challenging. Obstacles stem from variability in data formats, coding schemes, and adoption of non-standard lists within each EHR. The success of large-scale multicenter ACHD research will require institution-specific data integration efforts.
authors.affiliation: Adult Congenital Heart Disease Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, United States. Electronic address: brobergc@ohsu.edu.
authors.forename: Craig S
authors.initials: CS
authors.lastname: Broberg
authors.affiliation: Adult Congenital Heart Association, Philadelphia, PA, United States; Oregon Clinical and Translational Research Institute, Oregon Health & Science University, Portland, OR, United States.
authors.forename: Julie
authors.initials: J
authors.lastname: Mitchell
authors.affiliation: Collaboration in Research for Effective Diagnostics, CRED, Université de Sherbrooke, Sherbrooke, QC, Canada.
authors.forename: Silven
authors.initials: S
authors.lastname: Rehel
authors.affiliation: Collaboration in Research for Effective Diagnostics, CRED, Université de Sherbrooke, Sherbrooke, QC, Canada.
authors.forename: Andrew
authors.initials: A
authors.lastname: Grant
authors.affiliation: Adult Congenital Heart Association, Philadelphia, PA, United States.
authors.forename: Ann
authors.initials: A
authors.lastname: Gianola
authors.affiliation: Oregon Clinical and Translational Research Institute, Oregon Health & Science University, Portland, OR, United States.
authors.forename: Peter
authors.initials: P
authors.lastname: Beninato
authors.affiliation: Oregon Clinical and Translational Research Institute, Oregon Health & Science University, Portland, OR, United States.
authors.forename: Christiane
authors.initials: C
authors.lastname: Winter
authors.affiliation: Adult Congenital Heart Association, Philadelphia, PA, United States.
authors.forename: Amy
authors.initials: A
authors.lastname: Verstappen
authors.affiliation: Boston Adult Congenital Heart Disease and Pulmonary Hypertension Program, Boston Children's Hospital, Department of Cardiology, Boston, MA, United States; Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, United States.
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Valente
authors.affiliation: Adult Congenital Heart Disease Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, United States.
authors.forename: Joseph
authors.initials: J
authors.lastname: Weiss
authors.affiliation: Columbus Ohio Adult Congenital Heart Disease Program, The Heart Center, Nationwide Children's Hospital, Departments of Pediatrics and Internal Medicine, The Ohio State University, Columbus, OH, United States.
authors.forename: Ali
authors.initials: A
authors.lastname: Zaidi
authors.affiliation: Wisconsin Adult Congenital Heart Disease Program, Herma Heart Center, Children's Hospital of Wisconsin, Medical College of Wisconsin, Milwaukee, WI, United States.
authors.forename: Michael G
authors.initials: MG
authors.lastname: Earing
authors.affiliation: Columbus Ohio Adult Congenital Heart Disease Program, The Heart Center, Nationwide Children's Hospital, Departments of Pediatrics and Internal Medicine, The Ohio State University, Columbus, OH, United States.
authors.forename: Stephen
authors.initials: S
authors.lastname: Cook
authors.affiliation: Columbus Ohio Adult Congenital Heart Disease Program, The Heart Center, Nationwide Children's Hospital, Departments of Pediatrics and Internal Medicine, The Ohio State University, Columbus, OH, United States.
authors.forename: Curt
authors.initials: C
authors.lastname: Daniels
authors.affiliation: Cincinnati Adolescent and Adult Congenital Heart Disease Program, The Heart Institute at Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
authors.forename: Gary
authors.initials: G
authors.lastname: Webb
authors.affiliation: Adult Congenital Heart Centre, Montreal Heart Institute, University of Montreal, Montreal, QC, Canada.
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.affiliation: MAUDE Unit (McGill Adult Unit for Congenital Heart Disease), McGill University Health Center, Montreal, QC, Canada.
authors.forename: Ariane
authors.initials: A
authors.lastname: Marelli
authors.affiliation: Boston Adult Congenital Heart Disease and Pulmonary Hypertension Program, Boston Children's Hospital, Department of Cardiology, Boston, MA, United States.
authors.forename: Michelle Z
authors.initials: MZ
authors.lastname: Gurvitz
authors.affiliation: Division of Pediatric Cardiology, Oregon Health & Science University, Portland, OR, United States.
authors.forename: David J
authors.initials: DJ
authors.lastname: Sahn
mesh_terms: D000328:Adult; D001331:Automation / Q000379:methods*; D059019:Clinical Coding; D003625:Data Collection / Q000379:methods*; D016208:Databases, Factual; D057286:Electronic Health Records; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis*; D006801:Humans; D008297:Male; D008875:Middle Aged; D055815:Young Adult
keywords: Congenital heart disease; Electronic health records; Healthcare information systems; Multicenter data collection