Associate Professor Bronwyn Hemsley will pre
sent key research findings on the use of the Personally Controlled Electronic Health Record (PCEHR) / My Health Record by young adults with severe communication disabilities, at the inaugural HISA NSW event in Newcastle on 20 November 2105.
A/Prof Hemsley, a Certified Practicing Speech Pathologist, Member of Speech Pathology Australia and full time researcher at The University of Newcastle, is leading the three year project funded by the National Health and Medical Research Council.
The ‘My Health Transition’ research team is unique in that it combines the expertise of researchers in speech pathology, augmentative and alternative communication, health informatics, design, public health, nursing and communication disabilities, along with an expert consumer panel.
A/Prof Hemsley says people with sever communication impairments are often excluded from research because of their difficulties with speech.
“In our study, using a secure online video call, and using their own communication methods, they can tell us – and show us – how they store their health information at home, and what they think of the new opportunities in using personal e-health records such as the My Health Record,” she says.
The team’s research to date shows that ‘My Health Record’ is an interactive and collaborative communication tool that might benefit people who cannot otherwise be able to convey their own health history, medications, or preferences for care in a timely way.
“We hope that our research and resulting guidance will help to prepare a new generation of young adults with severe communication disabilities to be at the centre of their own health information management, with all reasonable and necessary supports to use the My Health Record at home.
“We’ve already discovered that parents manage a loose archive of hundreds of health documents at home, and store them in a variety of ways – in filing cabinets, in bookshelves, flip charts, on the fridge, in a box near the phone, on wallet cards, or bag in the back of the wheelchair.
“Some parents tell us that having to repeatedly go over a young person’s complex health history and interventions wastes vital time and energy in health appointments, and can add to their distress.
Young adults aged 16-21 with cerebral palsy, intellectual disability, brain injury, or autism, and their parents, who wish to talk with Bronwyn about their ‘health information at home’ can get in touch via: