Disability Research NetworkDisability Research Network

Personally controlled electronic health records

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 the 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.

Consumers are engaged in all aspects of this research, with Meredith Allan (AI) included in the research team, CID Sophie Hill representing 'consumers' in general as lead on the Cochrane Consumers and Communication Review Group, and consumers being included as research participants. 

An expert reference group of five consumers with disabilities will have into the project and will be consulted in the Expert Consensus Panel stage. 

As such, consumers are involved in design, implementation, conduct, and analysis of the research. 

Research outcomes will be communicated to the community through weekly update of a project website, showing progress on the project on recruitment, data collection, analysis, and results. 

The mobile technology app "BridgeIt" is a tangible electronic means of disseminating the research findings to the public.

Findings will also be published in international peer reviewed journals and at international conferences.