NDS comments to the Department of Health on the
proposed ‘My Health Record’ system and legislation
NDS appreciates the opportunity to comment on the Electronic Health Records and
Healthcare identifiers: Legislation Discussion Paper.
Improving healthcare is a disability priority
Almost 69% of people with profound or severe disability report having four or more longterm health conditions – six times the rate reported by people without disability.1 Achieving
better health outcomes and better healthcare for people with disability is therefore one of
the six priorities in the National Disability Strategy 2010-2020, which was agreed across all
governments and underpinned by economic, social and human rights imperatives.
Hand in hand with improving healthcare outcomes is improving the responsiveness of
healthcare services for people with disability, which continues to be an important objective
for all governments. This will be greatly helped by the widespread operation of the
personally controlled electronic health record system and the Healthcare Identifiers Service
– now known as the My Health Record system.
NDS welcomes measures to improve take-up of the My Health Record system
NDS has been a long-time supporter of the My Health Record system. Once working well
we believe this system will significantly improve the experience people with disability have
with health services and their health outcomes. The system will improve the accuracy of
healthcare information transfer. This is particularly helpful for people with disability with
cognitive or memory difficulties, or who use non-standard communication methods as it will
reduce the number of times they have to repeat or remember their healthcare history. It can
also be a lifesaver when information is required urgently.
However, the system is not yet widely used and this is necessary to ensure its success.
Therefore, NDS supports the proposal to change from an ‘opt-in’ basis to an ‘opt-out’
model. This is by far the most direct way of increasing the uptake of My Health Record by
individuals and healthcare providers.
Make accessible information available on the My Health Record system
General awareness of the current e-health record system is low.2 This is one of the reasons
that an ‘opt-out’ approach is desirable. However, this approach does not negate the
1
Australian Institute of Health and Welfare 2010. Australia Health 2010, AHIW, Canberra
Hunter Valley Research Foundation. 2013. Community Personal Health Information and
Registration on the eHealth System. The University of Newcastle
2
National Disability Services: Submission on the My Health Record System
governments’ responsibility to improve awareness of the My Health Record system and to
make sure that everyone who uses it understands their choices. Otherwise, there is a risk
that the right to informed consent will be breached.
NDS is pleased that the simpler and more accessible name ‘My Health Record’. This userfriendly approach should be applied to all aspects of the system to make it more useful to all
stakeholders – particularly people with disability. The Government will also need to ensure
information about the system is available in a range of alternative formats including plain
English, pictorial, electronic and Auslan.
Disability workers and organisations will need to assist people with disability who have
cognitive and /or communication difficulties to use health services and manage their
personal health records. To assist this process, My Health Record should include
accessible information about how to provide assistance without breaking privacy laws. NDS
could help facilitate distribution of this information.
Address opportunities for essential disability information to be collected
NDS supports the expansion of the definition of healthcare to include ‘health-related
disability, palliative care or aged care services,’ to reduce doubt about what should be
included and improve the usability of system. In particular, it makes sense to improve
consistency with definitions in privacy legislation.
There is also an opportunity to promote the inclusion of some essential disability support
information. This would be particularly useful for hospitalisations. People with disability have
a higher rate of hospitalisation than others, yet often their needs while in hospital are not
well met3. NDS is aware that sometimes disability support clients do not receive adequate
support while in hospital, or are discharged without the knowledge of their essential support
provider. This is due to a lack of accurate information transfer about their support needs.
The consequences can be devastating for individuals and costly for the system.
Identifying specific essential access or support needs (such as communication
requirements, feeding assistance and the name of the supported accommodation provider
an individual uses) on the My Health Record would make a substantial difference. It would
not only make the healthcare experience better for the patient, but it would also improve
efficiency and outcomes. Therefore, NDS encourages government to explore options to
broaden the information that can be recorded for people with disability.
Address challenges for community based health-care services
Many people with disability may receive a health assessment, medication review report or
health-related management plan in their own home, including in supported accommodation
settings. The resulting health information must be uploaded on to personal health records
and stored in My Health Record as not to do so could comprise these individuals
healthcare.
3
NSW Government Department of Family and Community Services. 2012. Use of
Emergency and inpatient hospital services by ADHC clients – Final Report.
2
National Disability Services: Submission on the My Health Record System
Therefore, ensuring appropriate access to the My Health Record system by authorised
personnel in community settings is crucial, and needs to be addressed in the legislation and
trials. This should include allied health professionals working in disability service settings. It
will be important to involve these professionals and accommodation support providers in the
evaluation of the trials to ensure a pragmatic approach is developed.
Ensure attention is paid to disability issues in the trial phase
We understand the legislation will enable a pilot to be implemented from 2016 where
individuals in a trial region will be automatically registered for an eHealth record unless they
advise they do not want to be. In these trials it will be important to:

consider the impact on people with disability and disability providers

ensure accessible nformation is available for people with disability and the people that
support them. This should include disability accommodation support providers who are
involved in assisting people with disability to access healthcare services. NDS can assist
the Government in getting relevant information to disability support providers.
In selecting areas for the trials consideration should be given to the trial sites for the
National Disability insurance Scheme (NDIS) which will have been operating for three
years. In these areas, the disability sector will have already transitioned to the NDIS and be
more established than in other areas where the NDIS will start transitioning from July 2016.
Address opportunities for inclusive and compatible system features
NDS urges government to ensure the technological platform for My Health Care is fully
accessible. This will not only improve the usage by people with disability it can also offer
future employment opportunities for people with disability – a key priority in the National
Disability Strategy and the NDIS.
NDS also supports consideration of how the system might operate across sectors. As noted
in the discussion paper it may be possible for the NDIS to use healthcare identifiers to
improve the accuracy of information collected. Furthermore, it may be possible to facilitate
better information sharing about disability support needs between sectors.
June 2015
Contact:
Dr Ken Baker
Chief Executive
National Disability Services
National Disability Services is the peak industry body for non-government disability
services. Its purpose is to promote and advance services for people with disability. Its
Australia-wide membership includes 1100 non-government organisations, which support
people with all forms of disability. Its members collectively provide the full range of disability
services—from accommodation support, respite and therapy to community access and
employment. NDS provides information and networking opportunities to its members and
policy advice to State, Territory and Federal governments.
3