A Conceptual Model of Personal Health Record for Autistic Patients

Introduction: The personal health record of patient with autism has not been adequately addressed. While, these records play an important role to provide a good perspective on how to diagnose autism, negotiating, coordinating and designing services and interventions by families and physicians during delivery of multiple services. The present study is aimed to present a conceptual model of electronic personal health record for patients with autism.Material and Methods: This study was conducted on six psychiatric practitioners and six pediatricians from Raoul-e-Akram Hospital and Ali Asghar Hospital with purposeful sampling. A questionnaire has been used for data gathering and identifying information needs. The content validity was measured using expert panel method and test-retest method (r=0.79) was used to perform the reliability test.Results: According to the findings, the most important data elements of the conceptual model of the personal health record for patients with autism from the viewpoint of physicians are divided into two demographic data segments including first name, father's name, national code, Age, gender, marital status, address and telephone, and clinical data including maternal gestational age, family history, parental relationship, history of developmental delay, name of patient's drug use, test results, age of the first diagnosis of autism , seizure, mental retardation, early diagnosis, treatment history and individual function level (based on valid clinical scales) such as a general clinical measure .Conclusion: Since autism patients’ long life clinical information that recorded in their electronic health records system plays an important role in diagnosis and management of patients' clinical problems, the conceptual model of personal health record for patients with autism could have a significant effect in managing and integrating patient clinical information, increasing the quality of care, and reducing the cost of treatment and diagnosis.