title: Connecting Families to Their Health Record and Care Team: The Use, Utility, and Impact of a Client/Family Health Portal at a Children's Rehabilitation Hospital.
abstract: Health care portals have the potential to provide consumers with timely, transparent access to health care information and engage them in the care process.
  
  
  
  The objective was to examine the use, utility, and impact on engagement in care and caregiver-provider communication of a client/family portal providing access to electronic health records (EHRs) and secure, 2-way e-messaging with care providers.
  
  
  
  We conducted a prospective, mixed-methods study involving collection of caregivers' portal usage information over a 14-month period (from portal introduction in January 2015 to the end of the study period in March 2016), a Web-based survey for caregivers administered after a minimum of 2 months' exposure to the portal and repeated 2 months later, and focus groups or individual interviews held with caregivers and service providers at the same points in time. The survey assessed caregivers' perceptions of the utility of and satisfaction with the EHR and e-messaging, and the portal's impact on client engagement and perceptions of caregiver-provider communication. A total of 18 caregivers (parents) completed surveys and 6 also took part in focus groups or interviews. In addition, 5 service providers from different disciplines took part in focus groups or interviews.
  
  
  
  Although usage patterns varied, the typical pattern was a steady level of use (2.5 times a month over an average of 9 months), which is higher than typically reported use. The portal pages most frequently accessed were the home page, health record main page, appointment main page, and reports main page. The Web-based survey captured caregivers' perceptions of usefulness of and satisfaction with the EHR and portal messaging, as well as the portal's impact on their engagement in care and perceptions of caregiver-provider communication. The surveys indicated a moderate degree of utility of and satisfaction with the portal features, and a low but emerging impact on engagement in care and caregiver-provider communication (survey scales measuring these outcomes displayed excellent internal consistency, with Cronbach alpha ranging from .89 to .95). Qualitative themes from focus groups and interviews supported and extended the survey findings. Caregivers and service providers saw appreciable information benefits and provided recommendations to increase portal use and utility. Caregivers focused on the scope of organizational adoption of the portal system and indicated their hopes for the future of the portal, whereas service providers were concerned about how to best manage their investment of time and effort in preparing client-friendly reports and messaging clients via the portal.
  
  
  
  Overall, the findings show the promise of the portal and the need for ongoing evaluation to show the portal's ultimate potential in enhancing engagement in care and communication with care providers.
authors.affiliation: Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.|Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
authors.forename: Gillian
authors.identifier: 0000-0001-7199-1217
authors.initials: G
authors.lastname: King
authors.affiliation: Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.|Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
authors.forename: Joanne
authors.identifier: 0000-0002-6849-1403
authors.initials: J
authors.lastname: Maxwell
authors.affiliation: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
authors.forename: Amir
authors.identifier: 0000-0001-5229-976X
authors.initials: A
authors.lastname: Karmali
authors.affiliation: Canada Health Infoway, Toronto, ON, Canada.
authors.forename: Simon
authors.identifier: 0000-0002-4851-4380
authors.initials: S
authors.lastname: Hagens
authors.affiliation: Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
authors.forename: Madhu
authors.identifier: 0000-0003-3764-0493
authors.initials: M
authors.lastname: Pinto
authors.affiliation: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.|Faculty of Social Work, University of Toronto, Toronto, ON, Canada.
authors.forename: Laura
authors.identifier: 0000-0002-3397-021X
authors.initials: L
authors.lastname: Williams
authors.affiliation: Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.|Faculty of Social Work, University of Toronto, Toronto, ON, Canada.
authors.forename: Keith
authors.identifier: 0000-0002-3478-884X
authors.initials: K
authors.lastname: Adamson
mesh_terms: D000328:Adult; D017028:Caregivers; D003142:Communication; D057286:Electronic Health Records; D005192:Family Health / Q000193:education*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents; D000072638:Patient Portals; D011446:Prospective Studies; D012047:Rehabilitation Centers; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: caregivers; children with disabilities; disability; electronic health records; engagement; health information; patient portals