Using the “Information Rx” Process to Refer Adults and Parents of Children with Metabolic Conditions to the Genetics Home Reference Web Site for Health Information

Abstract

Genetics Home Reference Project - University of Utah, Department of Biomedical InformaticsThe focus of this evaluation is the Health Information Rx Program for Newborn Screening and Related Genetic Disorders. This program encourages physicians to direct the parents of newborns with metabolic conditions identified by screening to the Genetics Home Reference (GHR) Web site (http://ghr.nlm.nih.gov/). The project involves a pilot project and feasibility study to: a) intervene and provide an information prescription to all parents of Utah newborns who are screened and receive a positive diagnosis of a metabolic condition, b) intervene to urge affected parents to use Genetics Home Reference in order to learn more about their child’s metabolic condition; c) evaluate the impact of both interventions and, d) determine if the pilot is a possible prelude to a regional or national expansion of the proposed interventions