title: Exploring Concordance of Patient-Reported Information on PatientsLikeMe and Medical Claims Data at the Patient Level.
abstract: BACKGROUND
  With the emergence of data generated by patient-powered research networks, it is informative to characterize their correspondence with health care system-generated data.
  
  
  OBJECTIVE
  This study explored the linking of 2 disparate sources of real-world data: patient-reported data from a patient-powered research network (PatientsLikeMe) and insurance claims.
  
  
  METHODS
  Active patients within the PatientsLikeMe community, residing in the United States, aged 18 years or older, with a self-reported diagnosis of multiple sclerosis or Parkinson's disease (PD) were invited to participate during a 2-week period in December 2014. Patient-reported data were anonymously matched and compared to IMS Health medical and pharmacy claims data with dates of service between December 2009 and December 2014. Patient-level match (identity), diagnosis, and usage of disease-modifying therapies (DMTs) were compared between data sources.
  
  
  RESULTS
  Among 603 consenting patients, 94% had at least 1 record in the IMS Health dataset; of these, there was 93% agreement rate for multiple sclerosis diagnosis. Concordance on the use of any treatment was 59%, and agreement on reports of specific treatment usage (within an imputed 5-year period) ranged from 73.5% to 100%.
  
  
  CONCLUSIONS
  It is possible to match patient identities between the 2 data sources, and the high concordance at multiple levels suggests that the matching process was accurate. Likewise, the high degree of concordance suggests that these patients were able to accurately self-report their diagnosis and, to a lesser degree, their treatment usage. Further studies of linked data types are warranted to evaluate the use of enriched datasets to generate novel insights.
authors.affiliation: PatientsLikeMe, Cambridge, MA, United States.
authors.forename: Gabriel S
authors.identifier: http://orcid.org/0000-0001-7647-3662
authors.initials: GS
authors.lastname: Eichler
authors.forename: Elisenda
authors.identifier: http://orcid.org/0000-0003-0556-1862
authors.initials: E
authors.lastname: Cochin
authors.forename: Jian
authors.identifier: http://orcid.org/0000-0002-5121-7600
authors.initials: J
authors.lastname: Han
authors.forename: Sylvia
authors.identifier: http://orcid.org/0000-0002-3188-0421
authors.initials: S
authors.lastname: Hu
authors.forename: Timothy E
authors.identifier: http://orcid.org/0000-0003-0744-1266
authors.initials: TE
authors.lastname: Vaughan
authors.forename: Paul
authors.identifier: http://orcid.org/0000-0002-2293-9284
authors.initials: P
authors.lastname: Wicks
authors.forename: Charles
authors.identifier: http://orcid.org/0000-0001-9883-1897
authors.initials: C
authors.lastname: Barr
authors.forename: Jenny
authors.identifier: http://orcid.org/0000-0003-0816-6075
authors.initials: J
authors.lastname: Devenport
mesh_terms: D000368:Aged; D003695:Delivery of Health Care / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D007345:Insurance Claim Review / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D057566:Self Report
keywords: feasibility of data linking; patient-powered research network