Using information prescriptions to refer patients with metabolic conditions to the Genetics Home Reference website

Objectives: The objectives of this study were to assess the reactions of adult patients and parents of children with metabolic conditions to receipt of an ʹʹinformation prescriptionʹʹ (IP) to visit Genetics Home Reference (GHR), a National Institutes of Health/National Library of Medicine online resource, and evaluate the perceived utility of information found on the site. Methods: Patients seen at the University of Utah Metabolic Service Clinic were invited to participate in the study and asked to complete an initial survey to gather demographic data and an online survey six weeks later to obtain information about user experience. Results: Fifty-three of 82 individuals completed both surveys, for an overall response rate of 64.6%. Most respondents (88.7%) agreed that receiving the IP was a ʹʹgood idea,ʹʹ and nearly all used the IP to visit GHR. More than three-quarters (79.6%) agreed that information on GHR supplemented a physicianʹs advice; 60.4% reported an improved understanding of a health condition; and 41.5% either looked for or would consider looking for additional information. Eighty-six percent of respondents were satisfied with the information found on GHR, and 80% would recommend the site. Conclusions: Use of an IP to direct patients to GHR was well received, and retrieved information was perceived as useful in key areas. The high level of satisfaction with GHR argues for expanded use of the IP approach in this patient population.