In October 2013 the Australian Government announced awarding of a 3-year project grant NHMRC to Dr. Bronwyn Hemsley, Prof. Susan Balandin, A/Prof. Andrew Georgiou, and Dr. Sophie Hill (Chief Investigators) and associate investigators, entitled “The Personally Controlled Electronic Health Record: Charting the Course for Successful Healthcare Transitions for Young Adults with Communication Disabilities.” This 3 year project is currently in review of the Ethics Committee of The University of Newcastle, and is expected to commence in June 2014 to end June 2017.
Adolescents and young adults with chronic health conditions and communication disabilities struggle to communicate their health information with service providers. This causes problems in care when moving from child to adult health services. This study will investigate their use of the Personally Controlled Electronic Health Record as a means to support timely and effective information exchange to improve healthcare for these vulnerable young adults.
Young adults with chronic disabling health conditions, including cerebral palsy and intellectual disabilities, often struggle to communicate key aspects of their personal health information to health service providers. This results in poor care, including medication errors, poor discharge planning, and problems meeting the person’s unique care support needs. The Personally Controlled Electronic Health Record (PCEHR) is a national e-health program designed to improve the exchange of information between patients and their health care providers. It promotes patient-centred care enabling patients to take an active role in health decisions and healthcare planning. The PCEHR offers major benefits for patients with chronic disabling conditions who frequently use health services, and are often required to change many of their service providers in the transition from child to adult services. Yet, little is known about how they will be enabled to safely and effectively use the PCEHR. This research will closely examine the views, needs, and experiences of young adults with chronic disabling health conditions and communication disabilities on their preferences regarding how they keep and use personal health information, and any barriers to or strategies for enabling access to the PCEHR. We will interview older adolescents and young adults with communication disabilities, and observe these adults as they engage with their paper-based health records and the PCEHR system. We will also conduct focus groups with their carers and health providers. A mobile technology App “BridgeIT” will be developed to disseminate results. The resulting evidence and guidance will (a) provide important evidence that will inform the effective design and development of the PCEHR early in its uptake and use in Australia, and (b) ensure that young adults with disabilities can benefit by improved information exchange at the point of care when moving from child to adult health services.