title: The eFOSTr PROJECT: design, implementation and evaluation of a web-based Personal Health Record to support health professionals and families of children undergoing transplants.
abstract: We describe the eFOSTr PROJECT, which has involved the design, implementation and testing of a unique Internet-based Personal Health Record (PHR) to support the families of transplant children and their healthcare providers. There are many gaps in the way that information is stored for children undergoing or about to undergo transplants. This group of children presents the most challenging exercise in information support between geographic and institutionally separated medical teams. They are, however, supported by highly motivated parents and families in life-threatening circumstances. A PHR was designed that allows for secure data entry, data storage, and easy controlled data access by the children's guardians or parents. The record includes contact and team member names, and medical data such as growth charts, immunizations, allergies, medications, lab values and scanned or digitized medical reports. Families can record the progress of their child as they would with a paper binder and customize their child's record with a photograph gallery and Internet link section for personal and general interest. Extensive computer-based testing of the PHR is complete. The system is being evaluated to determine the extent to which it meets the information needs of families and health providers in differing situations across Canada. The effectiveness of the system as a means for providing continuity of information and education is also being assessed. To conduct these evaluations, new users are being interviewed and tracked in a qualitative longitudinal study. Characteristics of the needs of the transplant families known to the David Foster Foundation (DFF) in Canada are described so that comparisons can be made to other patient groups who could benefit from their own adapted and specialized PHRs.
authors.affiliation: School of Health Information Science, University of Victoria, Victoria, BC, Canada. jamespopkin@shaw.ca
authors.forename: James
authors.initials: J
authors.lastname: Popkin
authors.forename: Andre
authors.initials: A
authors.lastname: Kushniruk
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Borycki
authors.forename: Desmond
authors.initials: D
authors.lastname: Guarin
authors.forename: Lynne
authors.initials: L
authors.lastname: Mozley
authors.forename: Norm
authors.initials: N
authors.lastname: Kilarski
authors.forename: Laurie
authors.initials: L
authors.lastname: Robson
authors.forename: Walter
authors.initials: W
authors.lastname: Creed
mesh_terms: D000293:Adolescent; D001955:British Columbia; D002648:Child; D005190:Family; D006801:Humans; D020407:Internet; D007407:Interviews as Topic; D008137:Longitudinal Studies; D016347:Medical Records Systems, Computerized; D012944:Social Support; D011795:Surveys and Questionnaires; D019737:Transplants