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

Bronwyn Hemsley, Shaun McCarthy, Natalie Adams, Andrew Georgiou, Sophie Hill, Susan Balandin

Research output: Contribution to journalReview articleResearchpeer-review

Abstract

Background: The aim of this review was to explore the legal, ethical, and rights issues surrounding use of the Australian My Health Record (MyHR) by people with communication disability. Method: We undertook a narrative review of the legislation and research affecting the implementation of MyHR in populations with communication disability. Results: Use of MyHR by people with communication disability will require careful consideration in relation to (a) capacity and consent; (b) roles of nominated or authorised representatives in the system; and (c) the way decisions are made in relation to the use of MyHR, including supported decision-making for people with intellectual disability. Conclusion: Legal and ethical issues in the use of MyHR by people with communication disability centre on legal rights and equal access. These issues must be addressed if people with communication disability are to have full access to their legal rights and access in exercising personal choice and control in the use of MyHR.

LanguageEnglish
Pages506-514
Number of pages9
JournalJournal of Intellectual and Developmental Disability
Volume43
Issue number4
DOIs
Publication statusPublished - 2 Oct 2018

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Communication Disorders
Civil Rights
Disabled Persons
Ethics
disability
communication
Health
health
legal conclusion
Legislation
Intellectual Disability
Communication
Decision Making
legislation
decision making
narrative
Research
Population

Keywords

  • communication disability
  • communication impairments
  • eHealth records
  • ethics
  • legal issues
  • My Health Record

Cite this

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title = "Legal, ethical, and rights issues in the adoption and use of the “My Health Record” by people with communication disability in Australia",
abstract = "Background: The aim of this review was to explore the legal, ethical, and rights issues surrounding use of the Australian My Health Record (MyHR) by people with communication disability. Method: We undertook a narrative review of the legislation and research affecting the implementation of MyHR in populations with communication disability. Results: Use of MyHR by people with communication disability will require careful consideration in relation to (a) capacity and consent; (b) roles of nominated or authorised representatives in the system; and (c) the way decisions are made in relation to the use of MyHR, including supported decision-making for people with intellectual disability. Conclusion: Legal and ethical issues in the use of MyHR by people with communication disability centre on legal rights and equal access. These issues must be addressed if people with communication disability are to have full access to their legal rights and access in exercising personal choice and control in the use of MyHR.",
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Legal, ethical, and rights issues in the adoption and use of the “My Health Record” by people with communication disability in Australia. / Hemsley, Bronwyn; McCarthy, Shaun; Adams, Natalie; Georgiou, Andrew; Hill, Sophie; Balandin, Susan.

In: Journal of Intellectual and Developmental Disability, Vol. 43, No. 4, 02.10.2018, p. 506-514.

Research output: Contribution to journalReview articleResearchpeer-review

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AU - Hemsley, Bronwyn

AU - McCarthy, Shaun

AU - Adams, Natalie

AU - Georgiou, Andrew

AU - Hill, Sophie

AU - Balandin, Susan

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AB - Background: The aim of this review was to explore the legal, ethical, and rights issues surrounding use of the Australian My Health Record (MyHR) by people with communication disability. Method: We undertook a narrative review of the legislation and research affecting the implementation of MyHR in populations with communication disability. Results: Use of MyHR by people with communication disability will require careful consideration in relation to (a) capacity and consent; (b) roles of nominated or authorised representatives in the system; and (c) the way decisions are made in relation to the use of MyHR, including supported decision-making for people with intellectual disability. Conclusion: Legal and ethical issues in the use of MyHR by people with communication disability centre on legal rights and equal access. These issues must be addressed if people with communication disability are to have full access to their legal rights and access in exercising personal choice and control in the use of MyHR.

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