title: Distributed health data networks: a practical and preferred approach to multi-institutional evaluations of comparative effectiveness, safety, and quality of care.
abstract: BACKGROUND
  Comparative effectiveness research, medical product safety evaluation, and quality measurement will require the ability to use electronic health data held by multiple organizations. There is no consensus about whether to create regional or national combined (eg, "all payer") databases for these purposes, or distributed data networks that leave most Protected Health Information and proprietary data in the possession of the original data holders.
  
  
  OBJECTIVE
  Demonstrate functions of a distributed research network that supports research needs and also address data holders concerns about participation. Key design functions included strong local control of data uses and a centralized web-based querying interface.
  
  
  METHODS
  We implemented a pilot distributed research network and evaluated the design considerations, utility for research, and the acceptability to data holders of methods for menu-driven querying. We developed and tested a central, web-based interface with supporting network software. Specific functions assessed include query formation and distribution, query execution and review, and aggregation of results.
  
  
  RESULTS
  This pilot successfully evaluated temporal trends in medication use and diagnoses at 5 separate sites, demonstrating some of the possibilities of using a distributed research network. The pilot demonstrated the potential utility of the design, which addressed the major concerns of both users and data holders. No serious obstacles were identified that would prevent development of a fully functional, scalable network.
  
  
  CONCLUSIONS
  Distributed networks are capable of addressing nearly all anticipated uses of routinely collected electronic healthcare data. Distributed networks would obviate the need for centralized databases, thus avoiding numerous obstacles.
authors.affiliation: Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA 02215, USA. jeff_brown@harvardpilgrim.org
authors.forename: Jeffrey S
authors.initials: JS
authors.lastname: Brown
authors.forename: John H
authors.initials: JH
authors.lastname: Holmes
authors.forename: Kiran
authors.initials: K
authors.lastname: Shah
authors.forename: Ken
authors.initials: K
authors.lastname: Hall
authors.forename: Ross
authors.initials: R
authors.lastname: Lazarus
authors.forename: Richard
authors.initials: R
authors.lastname: Platt
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000368:Aged; D001289:Attention Deficit Disorder with Hyperactivity / Q000188:drug therapy; D000697:Central Nervous System Stimulants / Q000627:therapeutic use; D002648:Child; D002675:Child, Preschool; D057186:Comparative Effectiveness Research / Q000379:methods*; D017723:Drug Utilization Review / Q000706:statistics & numerical data*; D006801:Humans; D007223:Infant; D007256:Information Systems / Q000458:organization & administration*; D020407:Internet; D008875:Middle Aged; D010865:Pilot Projects; D011787:Quality of Health Care; D012985:Software Design; D016896:Treatment Outcome
chemical_list: D000697:Central Nervous System Stimulants