Legal, ethical and rights issues in adoption of My Health Record

Article Title: Legal, ethical, and rights issues in the adoption and use of the “My Health Record” by people with communication disability in Australia

Aims and method: The aim of this review was to explore the legal, ethical, and rights issues surrounding the use of the Australian My Health Record by people with communication disability. The method involved a narrative review of the legislation and literature.

Results: The My Health Record offers substantial benefits to people with a communication disability around the exchange of health information. However, the way that both health and disability service providers implement My Health Record will impact substantially on how people with communication disability use the system. Lack of knowledge or awareness are key barriers that could impact how service providers engage with people with communication disability who wish to use the Record.

Future enhancements of My Health Record need to consider the views and experiences of people with communication disability, and their nominated or authorised representatives, on barriers and facilitators for meaningful use of the record. There is also an ethical imperative to explore the benefits of the My Health Record for people who struggle to communicate their own health information. Access to the My Health Record is about legal rights and social justice, enabling people to enjoy the same rights as others using the Record and to exercise personal control over sharing their health information. Use of My Health Record by people with communication disability requires careful consideration of issues related to capacity and consent.

Implications: People with communication disability will continue to struggle to access their own health information and to explain their health conditions to multiple health providers, unless barriers to use of the My Health Record are resolved.

Our onward queries: What is ‘meaningful’ use of the My Health Record for people with a communication disability, and what benefits does that meaningful use bring?

Full reference of article

Hemsley, B. McCarthy, S. Adams, N. Georgiou, A. Hill, S. Balandin, S. (2017) Legal, ethical, and rights issues in the adoption and use of the “My Health Record” by people with communication disability in Australia. Journal of Intellectual & Developmental Disability, p. 1-9.

Link to article: http://www.tandfonline.com/doi/abs/10.3109/13668250.2017.1294249

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