The interaction of Australia’s national electronic health record system, My Health Record, with the disability community has been a unique aspect of the debate since its inception.
A summary of the My Health Record system was outlined in our previous article here. In this article, we will look at the benefits of having a My Health Record (MyHR) for individuals with a disability, the challenges and risks, and what it means for organisations that work in the disability sector.
Benefits of a MyHR for the disability sector
The MyHR system aims to tackle the lack of information flow across our various healthcare providers. Importantly, 18% of medical errors are due to inadequate patient information. Individuals with a disability are three times more likely to suffer preventable harmful events in hospital, primarily due to inadequate communication or information flow.
In its submission to the Department of Health, National Disability Services (NDS) highlighted the potential benefits of a MyHR for individuals with disabilities, including:
- Holistic picture of health – The expansion to include allied health practitioners means that occupational therapists, physiotherapists, psychologists, and speech pathologists will be able to upload information to a person’s MyHR.
- Improved efficiency when seeking healthcare – Individuals with a disability tend to have a significant amount of medical records. This can often delay treatment because practitioners are reluctant to treat patients before collating all health records. The MyHR system is intended to provide quick access to comprehensive health information.
- Better health outcomes – Ultimately, it is hoped that the MyHR system will lead to improved health outcomes. NDS has noted that individuals with a disability often fail to receive adequate care, or are prematurely discharged. The transparency of the MyHR system will help improve knowledge transfer.
The benefits are expected to extend to carers, families, and organisations that work with individuals with disabilities. Carers and families can access a person’s MyHR any time and can put in their own health notes. For healthcare practitioners and carers, improved access to information will allow them to feel more confident in providing care.
Despite the benefits above, several concerns have been raised by the disability sector:
- Communication – There is criticism that the release of information about the MyHR system, its benefits, uses, and the opt-out process has not been tailored to individuals with special needs. In particular, carers and families have complained about the lack of support regarding appointing representatives.
- Opt-out process – Disability workers and organisations have found themselves explaining the MyHR system to their clients with very limited support. Vision Australia has also criticised the opt-out process for failing to meet accessibility standards.
- Privacy – Privacy concerns have led to almost 1 million Australians opting out of the MyHR system. These concerns are heightened in the disability sector where an individual’s MyHR is more likely to contain comprehensive and sensitive health data.
What do organisations and carers need to know?
There have been recent changes to the MyHR system that organisations and carers should be aware of.
- Expansion of the MyHR system to include allied health – organisations and carers who rely on medical records should ask allied health practitioners to place this information into a person’s MyHR.
- Third party view-only access – Many families or individuals with a disability do not want to allow carers or organisations to amend their MyHR. In these situations, ‘view only’ apps can be used to allow access without the ability to edit an individual’s MyHR.
- Communicating opt-out – during the opt-out trials, individuals with disabilities preferred to hear about the MyHR system from disability service providers whom they already had a connection with. This means organisations need to be aware of the MyHR system and have strategies to communicate it to clients.
- Consent and access settings – the MyHR system has complex consent and access settings which are all controlled by the individual. These are likely to be more readily used in the disability sector to grant access or restrict access where needed. With this comes the requirement for organisations and carers to ensure individuals with a disability are empowered and informed to make decisions regarding access.
The opt-out period has been extended until 15 November 2018. After this date, all individuals who have not opted out will have a MyHR made for them. This means that disability service providers, individuals with a disability, and carers need to be aware of the impact.
For organisations, we recommend the following steps;
- Understand the benefits and risks of a MyHR and train your staff to communicate this to individuals with a disability, so they can make an informed decision to stay in or opt-out.
- Be a leader in the sector and consider how the MyHR system could be incorporated into your operations to the benefit of individuals with a disability. For example, consider if your staff / carers should have view-only access to the MyHRs of their clients.
How we can help
Moores specialises in working with organisations in the disability sector. We are well placed to help organisations understand, consider, and implement changes associated with the MyHR system. Please feel free to contact Tony Rutherford, Practice Leader on (03) 9843 2100 or use the enquiry form below.
 ‘National E-health Strategy’, Deloitte, 30 September 2008.
 See for example: ‘The e-health literacy demands of Australia’s My Health Record’ published in Perspectives in Health Information Management, 1 October 2017.
 ‘Blind and low vision community neglected in My Health Record opt-out process’, World Vision, 23 July 2018.
 ‘Almost a million opt-out of My Health Record’, Sydney Morning Herald, 17 September 2018.