TY - JOUR
T1 - Use of the my health record by people with communication disability in Australia
T2 - a review to inform the design and direction of future research
AU - Hemsley, Bronwyn
AU - Georgiou, Andrew
AU - Carter, Rob
AU - Hill, Sophie
AU - Higgins, Isabel
AU - van Vliet, Paulette
AU - Balandin, Susan
PY - 2016/6/6
Y1 - 2016/6/6
N2 - Background: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. Objective: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, ‘My Health Record’ (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. Method: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. Research outcomes: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. Conclusion: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providersmust consider the supports needed for people with communication disability to use MyHR.There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information acrossmultiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.
AB - Background: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. Objective: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, ‘My Health Record’ (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. Method: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. Research outcomes: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. Conclusion: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providersmust consider the supports needed for people with communication disability to use MyHR.There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information acrossmultiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.
KW - Communication
KW - Communication disabilities
KW - Disability
KW - e-health
KW - Electronic health records
KW - Health communication
KW - Health equity
KW - Health information management
KW - Methods
KW - Personal health records
KW - Research
UR - http://www.scopus.com/inward/record.url?scp=85014499127&partnerID=8YFLogxK
U2 - 10.1177/1833358316652060
DO - 10.1177/1833358316652060
M3 - Article
C2 - 27269277
VL - 45
SP - 107
EP - 115
JO - Health Information Management Journal
JF - Health Information Management Journal
SN - 1833-3583
IS - 3
ER -