Health Literacy and Information Management in ADHD: Designing an Optimal Record

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DESCRIPTION (provided by applicant): Health literacy is an integral part of the pathway for the successful transfer of information between patients and providers. Parents of children with Attention Deficit/ Hyperactivity Disorder (ADHD) play an essential role in chronic care as they offer critical information to providers that drives appropriate education and disease management. We propose the development and evaluation of an electronic data entry tool that enables parents to communicate data essential to treatment of their children, regardless of their own literacy skills. The research plan addresses questions central to patient-centered information management: 1) how should a computer-based, personally controlled health record (PCHR) look and function to effectively gather data directly from patients, and, 2) how does health literacy influence parents' report of data on ADHD and the process-level events that result from parent-provider communication? The following specific aims organize the proposal: Aim 1. To identify and implement key features of data entry interfaces that create maximal usability across literacy levels for parental report on ADHD-related information, Aim 2. To assess the effect of health literacy on successful completion of parent-reported ADHD health information in both paper-based and PCHR formats, and Aim 3. To determine the association between health literacy and process-level outcomes for ADHD that stem from parent-provider exchange of information. Formative research methods during PCHR development will use one on one cognitive interviews, focus groups, and structured usability testing. The formal evaluation will study a diverse cohort of parents in a randomized trial of data entry (paper versus PCHR) for ADHD-specific information. Primary care records for children of this cohort will be analyzed for the prior 12 month period. Both a retrospective examination of documented ADHD processes of care and a prospective evaluation of the utility of data from the PCHR will occur. Literacy level is a primary variable of interest throughout the evaluation. This work addresses two health information technology goals of the Department of Health and Human Services: connectivity that provides clinicians with up-to-date patient data and the promotion of patient involvement in care. Findings will provide a usable and useful technology product that overcomes literacy related barriers and thereby improves care for the most common pediatric mental health disorder.