My name is A/Prof Bronwyn Hemsley and I am a researcher in Speech Pathology at the University of Newcastle. The aim of this study is to investigate how young adults with chronic disabling health conditions (e.g., cerebral palsy, intellectual disability, autism) and communication disabilities can be supported to use the Personally Controlled Electronic Health Record (PCEHR) or myHealth Record during transition from child to adult health services. We are inviting young adults (aged 16-21 years) with cerebral palsy, intellectual disability and/or autism and a communication impairment and/or their carers to take part in an interview, either in-person or via online video VSee computer software, during which we will ask you about how you store and use your health information and ask you to show us where you store information in your home and on your computer.
The transition from child to adult health services is a significant challenge young people with communication disabilities as there are so many changes in service delivery and so much information to be passed along to new service providers. Older adolescents and young adults with chronic disabling health conditions, including cerebral palsy, autism and intellectual disabilities, often struggle to communicate key aspects of their personal health information to new healthcare providers and services. This results in poor care, including medication errors, poor discharge planning, and problems meeting the person's unique care support needs.
This project will closely examine the views, needs, and experiences of young adults with chronic disabling health conditions and communication disabilities (AGED 16-21 years) and their families on their preferences regarding how they keep and use personal health information, and any barriers to or strategies for enabling access to the electronic health record (PCEHR or myHealth record). The PCEHR is a national e-health program designed to improve the exchange of information between patients and their health care providers.
More information about the project can be found here: http://safetycatchproject.net/pcehresearch-updates-2014/
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