A CONCEPTUAL MODEL OF PERSONAL HEALTH RECORD FOR AUTISTIC PATIENTS

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Abstract

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 Rasoul 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. Data analysis was done using descriptive statistics with SPSS version 23 software. In the design phase, graphs were plotted using Visio software. 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 demographic data segments, clinical data and individual function level (based on valid clinical scales) such as general clinical measure (by the physician, types of interventions, prenatal or near-births, registration of symptoms of parental impairment, examination of the course and prognosis based on the Gylliam Autism Rating Scale every six months by a psychologist and other psychiatric diagnoses. Conclusion: Since autism patients’ long life clinical information 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.

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Moghbeli, F., Adel, T., Langarizadeh, M., & Shoushtari, M. H. (2019). A CONCEPTUAL MODEL OF PERSONAL HEALTH RECORD FOR AUTISTIC PATIENTS. Frontiers in Health Informatics, 8(1). https://doi.org/10.30699/fhi.v8i1.197

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