Australia’s My Health Record, personally controlled electronic health records (PCEHR), for young adults with communication disabilities: Charting the course for successful child to adult health service transition.
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On 1st July 2014 we launched our new NHMRC project ‘The Australian PCEHR: Charting the course for successful healthcare transitions in young adults with communication disabilities.’ The research project runs for 3 years 2014-2017 and is funded by the National Health and Medical Research Council (NHMRC) at $390K. The research is administered and conducted at The University of Newcastle, NSW, Australia by Chief Investigator Dr. Bronwyn Hemsley, with co-investigators Prof. Susan Balandin at Deakin University; A/Prof. Andrew Georgiou at The University of New South Wales; Dr Sophie Hill at La Trobe University, Dr. Ben Kraal at Queensland University of Technology, Prof. Isabel Higgins at The University of Newcastle, Meredith Allan (consultant, Melbourne Victoria), and Dr. Nathan Wilson at the Western Sydney University. Ms Natalie Adams is our Research Associate and the main contact for the project updates and any media requests, on Natalie.Adams@newcastle.edu.au.
This project aims to investigate how young adults with communication disabilities can be supported to use the Personally Controlled Electronic Health Record (PCEHR; NHMRC App 2013) during transition from child to adult health services. The project adopts an inclusive advisory model in consulting with people with disability in all stages, and utilises multiple qualitative research methods (interviews, observations, document data analyses, and focus group research). The objectives are to (a) determine the views, experiences and needs of these young adults about using the PCEHR, (b) identify the roles of key stakeholders, including health and disability service providers, family and paid carers in supporting young adults’ use of the PCEHR, (c) determine the social, technical, and environmental factors affecting how these young adults with disability access and use their own health information, and (d) develop an evidence based framework of barriers and facilitators for young adults with chronic disabling health conditions using PCEHR; guidance for all stakeholders; and a mobile technology application or ‘app’ (entitled ‘BridgeIT’) for research translation.
Combined findings from all data sources will translate into fundamental outcomes in the design and implementation of health information technologies and changes in health policy surrounding the health care of young adults with chronic conditions and communication disabilities. The resulting guidance, audit tool, and mobile technology app “BridgeIT” will not only benefit young adults with chronic disabling health conditions but also the healthcare staff, paid carers and family carers who struggle to provide or access information across healthcare settings. Findings will also inform future research into the exchange of health information to sustain both patient centred and continuity of care as people with chronic disabling health conditions grow older and transfer in and out of health and aged care settings.