title: The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients.
abstract: BACKGROUND
  Personal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.
  
  
  METHODS
  A quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.
  
  
  RESULTS
  A total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.
  
  
  CONCLUSIONS
  Participants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.
authors.affiliation: Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada. David.Wiljer@rmp.uhn.on.ca
authors.forename: David
authors.initials: D
authors.lastname: Wiljer
authors.forename: Kevin J
authors.initials: KJ
authors.lastname: Leonard
authors.forename: Sara
authors.initials: S
authors.lastname: Urowitz
authors.forename: Emma
authors.initials: E
authors.lastname: Apatu
authors.forename: Christine
authors.initials: C
authors.lastname: Massey
authors.forename: Naa Kwarley
authors.initials: NK
authors.lastname: Quartey
authors.forename: Pamela
authors.initials: P
authors.lastname: Catton
mesh_terms: D001007:Anxiety / Q000175:diagnosis*; D001943:Breast Neoplasms / Q000523:psychology*; D002170:Canada; D004522:Educational Status; D005260:Female; D055991:Health Records, Personal / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D015999:Multivariate Analysis; D009862:Online Systems; D033283:Patient Access to Records / Q000523:psychology*; D010358:Patient Participation; D011594:Psychometrics; D036301:Qualitative Research; D020377:Self Efficacy; D011795:Surveys and Questionnaires
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