title: Patients who share transparent visit notes with others: characteristics, risks, and benefits.
abstract: BACKGROUND
  Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be.
  
  
  OBJECTIVE
  Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks.
  
  
  METHODS
  The OpenNotes study invited patients to access their primary care providers' visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes.
  
  
  RESULTS
  More than half (55.43%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site.
  
  
  CONCLUSIONS
  One in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients' ability to access their medical records, facilitating access to caregivers may improve perceived health behaviors and outcomes.
authors.affiliation: University of Washington, Division of General Internal Medicine, Seattle, WA, United States. sljack@uw.edu.
authors.forename: Sara L
authors.identifier: http://orcid.org/0000-0002-1278-3693
authors.initials: SL
authors.lastname: Jackson
authors.forename: Roanne
authors.identifier: http://orcid.org/0000-0002-6980-9321
authors.initials: R
authors.lastname: Mejilla
authors.forename: Jonathan D
authors.identifier: http://orcid.org/0000-0001-6481-6699
authors.initials: JD
authors.lastname: Darer
authors.forename: Natalia V
authors.identifier: http://orcid.org/0000-0002-4366-403X
authors.initials: NV
authors.lastname: Oster
authors.forename: James D
authors.identifier: http://orcid.org/0000-0001-6317-7987
authors.initials: JD
authors.lastname: Ralston
authors.forename: Suzanne G
authors.identifier: http://orcid.org/0000-0003-0427-1580
authors.initials: SG
authors.lastname: Leveille
authors.forename: Jan
authors.identifier: http://orcid.org/0000-0001-9366-1200
authors.initials: J
authors.lastname: Walker
authors.forename: Tom
authors.identifier: http://orcid.org/0000-0001-6755-9333
authors.initials: T
authors.lastname: Delbanco
authors.forename: Joann G
authors.identifier: http://orcid.org/0000-0002-7311-6835
authors.initials: JG
authors.lastname: Elmore
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003142:Communication; D003625:Data Collection; D057286:Electronic Health Records; D005190:Family; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D033283:Patient Access to Records; D018907:Privacy; D014481:United States; D055815:Young Adult
keywords: caregivers; health behavior; information sharing; open access to information