Bronwyn Hemsley's research is helping bypass speech difficulties through the use of mobile technologies and e-health solutions.

Technology providing healthcare solutions

Dr Bronwyn Hemsley's research is helping bypass speech difficulties through the use of mobile technologies and e-health solutions.

While working with children and adults with cerebral palsy, Speech Pathologist Dr Bronwyn Hemsley found her niche in health and social research.

She discovered that many people with more severe forms of disability who have little or no speech, also lack access to technologies that would help them get their message across, especially to people who are not familiar with their needs.

"Recent advancements, including the advent of mobile technologies such as the iPad, and e-health solutions, such as the Personally Controlled Electronic Health Record for all Australians, are potentially promising solutions for many people who struggle to convey their health needs," Dr Hemsley said.

"My skills as a speech pathologist now are really put to best use when including people with little or no speech in all aspects of research. Although they are traditionally excluded from most healthcare research, they can actually take part using various communication aids and other strategies," Dr Hemsley said.

Ensuring patients with severe speech disabilities avoid negative events in hospital is the focus of a new three-year NHMRC research project led by Dr Hemsley in collaboration with Associate Professor Andrew Georgiou, a health informatics researcher at The University of New South Wales, and consumer communication researcher Dr Sophie Hill at La Trobe University.

"Patients with communication disabilities often have high medical and functional support needs and enter hospital more frequently than their non-disabled peers. Their communication disabilities expose them to a three-fold increased risk for patient safety incidents in hospital," Dr Hemsley said.

These patients are more susceptible to safety incidents like falls, being given the wrong medication or choking. Because they haven't got a way of getting attention or explaining what's wrong they're much more likely to feel depressed, lonely and isolated while in hospital.

Dr Hemsley has received ethical approval from the University and the Cerebral Palsy Alliance to interview people who have been in hospital in the past 12 months to understand things that went wrong and how it affected them and also what helped people to stay safe in hospital.

By figuring out what goes wrong, and what helps to protect people, Dr Hemsley and her team will create a simple communication tool that can be used by hospital staff and carers when they first meet a patient with communication disabilities.

"Thisproject will result in the development of a framework and mobile technology application that helps to prevent and manage patient safety incidents."

"Mobile technologies could be useful for staff to check off relevant facts like 'does this person have a way to say yes or no', 'can they ask for the toilet', 'do they have a communication aid'," Dr Hemsley said.

Dr Hemsley is also leading another three-year NHMRC funded project entitled 'Personally Controlled Electronic Health Records: Charting the course for successful healthcare transitions in young adults with communication disabilities.'

"In addition to mobile technologies, we're starting to explore the utility of a relatively new e-health technology now available to all Australians - the Personally Controlled Electronic Health Record (PCEHR)," Dr Hemsley said.

The PCEHR is designed to improve communication of health information from the patient to any of the health providers that they permit to view the record.

"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," Dr Hemsley said.

"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 their Personally Controlled Electronic Health Record PCEHR," Dr Hemsley said.

Dr Hemsley and her team will interview young adults aged 16-21 years who have communication disabilities, and observe how they engage with their paper-based health records and the PCEHR system.

"When young adults are moving from children's health services to adult based services, they can feel that they are 'thrown in the deep end' because of a shift from family-centred to person-centred approach and fewer supports being available for adults than are provided for children." Dr Hemsley said.

"We want to find out what young adults with a disability want to communicate to their health providers. We also plan to speak to parents, direct support workers, and administrators in disability services to really understand all of the factors that might impact on this group's use of the PCEHR," Dr Hemsley said.

The resulting evidence will inform the effective design and development of the PCEHR early in its uptake and use in Australia, and 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

"Of course we're very pleased that the community, the University and the Australian Government's NHMRC have been very supportive of this area and has committed resources to improving the lives of people with communication disabilities."

"We're hoping that the results of these two studies help to drive rapid improvements in healthcare for people with disabilities across Australia, particularly as the new National Disability Insurance Scheme funding arrangements come into action."

"When people tell us about their experiences as a person with a communication disability, and that information is taken seriously when delivered as evidence from systematic research, it can make a real difference to people's lives," Dr Hemsley said.

People with disabilities and their carers interested in participating in either of these research projects are urged to contact Dr. Bronwyn Hemsley early in 2014 so as to be included in data collection over 2014-15 period. Please contact Bronwyn on bronwyn.hemsley@newcastle.edu.au or +61 2 4921 7352 for further information about either of these two studies.