title: Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users.
abstract: BACKGROUND
  Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.
  
  
  METHODS
  Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach.
  
  
  RESULTS
  Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%).
  
  
  CONCLUSIONS
  Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.
authors.affiliation: Children's Hospital Informatics Program, Children's Hospital Boston, Boston, MA, USA. elissa.weitzman@childrens.harvard.edu
authors.forename: Elissa R
authors.initials: ER
authors.lastname: Weitzman
authors.forename: Skyler
authors.initials: S
authors.lastname: Kelemen
authors.forename: Liljana
authors.initials: L
authors.lastname: Kaci
authors.forename: Kenneth D
authors.initials: KD
authors.lastname: Mandl
mesh_terms: D000293:Adolescent; D000328:Adult; D001900:Boston; D003430:Cross-Sectional Studies; D005191:Family Characteristics; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D055991:Health Records, Personal / Q000523:psychology*; D006305:Health Status Indicators; D006801:Humans; D007182:Income / Q000706:statistics & numerical data; D033181:Information Dissemination; D008297:Male; D010290:Parents / Q000523:psychology; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D026684:Personal Autonomy; D011320:Primary Health Care / Q000379:methods / Q000706:statistics & numerical data*; D040442:Public Health Informatics / Q000706:statistics & numerical data; D058996:Quality Improvement / Q000592:standards*; D057566:Self Report; D058992:Social Participation / Q000523:psychology*; D055815:Young Adult