title: Assessment of electronic health information system use and need in US adult congenital heart disease centers.
abstract: OBJECTIVE
  Efforts to improve care for adult congenital heart disease (ACHD) patients necessitates collection of accurate, detailed, longitudinal data. We sought to document what electronic health record systems are currently available at ACHD centers and to assess national interest in a uniform ACHD-focused system.
  
  
  METHODS
  Directors of ACHD centers in the United States were invited to complete an online questionnaire regarding current health information systems at their institution both for general cardiology and for ACHD. Topics that were surveyed included utility and perceived limitations of currently available systems. The survey also assessed the level of interest in an ACHD-specific system, and its optimal functions.
  
  
  RESULTS
  Thirty-four centers responded, representing both pediatric and adult institutions that care for patients with ACHD. Of these, 80% reported using a variety of commercially supported electronic medical record products, whereas only 50% employed an ACHD-specific noncommercial database to supplement their institutional system. Comparison of the two systems revealed that most clinical activities are pursued through the institutional electronic medical record system. Research and tracking of clinical activities were the primary uses of ACHD-specific systems, which have several noted limitations. Strong interest in an integrated ACHD-specific system was found among responders.
  
  
  CONCLUSIONS
  There is both an unmet need and a strong interest in an ACHD-oriented electronic health record that could facilitate research, outcome tracking, quality assurance, and inter-institutional collaboration, all functions that are lacking in electronic health systems currently in use.
authors.affiliation: Adult Congenital Heart Disease Program, Oregon Health and Science University, 3181 SW Sam Jackson Park Road, Portland, OR 97239, USA.
authors.forename: Joseph B
authors.initials: JB
authors.lastname: Weiss
authors.forename: Andrew
authors.initials: A
authors.lastname: Grant
authors.forename: Ariane
authors.initials: A
authors.lastname: Marelli
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.forename: Tony
authors.initials: T
authors.lastname: Maurais
authors.forename: Silven
authors.initials: S
authors.lastname: Rehel
authors.forename: Philippe
authors.initials: P
authors.lastname: Chetaille
authors.forename: Craig S
authors.initials: CS
authors.lastname: Broberg
mesh_terms: D000047:Academies and Institutes; D000328:Adult; D002648:Child; D003299:Cooperative Behavior; D057225:Data Mining; D016208:Databases, Factual; D057286:Electronic Health Records / Q000592:standards; D006302:Health Services Research; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000628:therapy*; D006801:Humans; D007256:Information Systems / Q000592:standards; D007373:Interinstitutional Relations; D020407:Internet; D010043:Outcome and Process Assessment, Health Care; D011785:Quality Assurance, Health Care; D011795:Surveys and Questionnaires; D014481:United States