title: Identification of Relationships Between Patients Through Elements in a Data Warehouse Using the Familial, Associational, and Incidental Relationship (FAIR) Initiative: A Pilot Study.
abstract: BACKGROUND
  Over the last several years there has been widespread development of medical data warehouses. Current data warehouses focus on individual cases, but lack the ability to identify family members that could be used for dyadic or familial research. Currently, the patient's family history in the medical record is the only documentation we have to understand the health status and social habits of their family members. Identifying familial linkages in a phenotypic data warehouse can be valuable in cohort identification and in beginning to understand the interactions of diseases among families.
  
  
  OBJECTIVE
  The goal of the Familial, Associational, & Incidental Relationships (FAIR) initiative is to identify an index set of patients' relationships through elements in a data warehouse.
  
  
  METHODS
  Using a test set of 500 children, we measured the sensitivity and specificity of available linkage algorithm identifiers (eg, insurance identification numbers and phone numbers) and validated this tool/algorithm through a manual chart audit.
  
  
  RESULTS
  Of all the children, 52.4% (262/500) were male, and the mean age of the cohort was 8 years old (SD 5). Of the children, 51.6% (258/500) were identified as white in race. The identifiers used for FAIR were available for the majority of patients: insurance number (483/500, 96.6%), phone number (500/500, 100%), and address (497/500, 99.4%). When utilizing the FAIR tool and various combinations of identifiers, sensitivity ranged from 15.5% (62/401) to 83.8% (336/401), and specificity from 72% (71/99) to 100% (99/99). The preferred method was matching patients using insurance or phone number, which had a sensitivity of 72.1% (289/401) and a specificity of 94% (93/99). Using the Informatics for Integrating Biology and the Bedside (i2b2) warehouse infrastructure, we have now developed a Web app that facilitates FAIR for any index population.
  
  
  CONCLUSIONS
  FAIR is a valuable research and clinical resource that extends the capabilities of existing data warehouses and lays the groundwork for family-based research. FAIR will expedite studies that would otherwise require registry or manual chart abstraction data sources.
authors: The University of Massachusetts Medical School, Division of Health Informatics & Implementation Science, Worcester, MA, United States. thomas.english@umassmed.edu.
authors: Thomas M
authors: http://orcid.org/0000-0002-3924-8391
authors: TM
authors: English
authors: Rebecca L
authors: http://orcid.org/0000-0001-6752-5715
authors: RL
authors: Kinney
authors: Michael J
authors: http://orcid.org/0000-0003-1191-4898
authors: MJ
authors: Davis
authors: Ariana
authors: http://orcid.org/0000-0001-5363-825X
authors: A
authors: Kamberi
authors: Wayne
authors: http://orcid.org/0000-0002-5193-7560
authors: W
authors: Chan
authors: Rajani S
authors: http://orcid.org/0000-0001-8406-6207
authors: RS
authors: Sadasivam
authors: Thomas K
authors: http://orcid.org/0000-0002-2909-4018
authors: TK
authors: Houston
keywords: Informatics for Integrating Biology and the Bedside (i2b2); data warehouse; familial relationship