Australian Greens Additional Comments
Australian Greens Comments
1.1 Australian Greens make the following comments and
additional recommendations concerning the inquiry into the Personally
Controlled Electronic Health Records Bill 2011.
1.2 The Greens recognise the enormous benefits of
e-health and electronic health records and remain supportive of the goals of
the PCEHR system.
No Access
1.3 The Greens agree, on balance, with the decision by
government to drop "no access" patient controls on records in the
PCEHR. However, we acknowledge the consumer stakeholder groups' concerns in
this area. For instance, the Consumers Health Forum in their submission, and
the Australian Federation of AIDS Organisations in previous remarks have made
the case that allowing patients to flag parts of the record as "no
access" could increase consumer confidence in the system.
1.4 Greens Senators would like to make it clear in the
bill that in the future "no access" controls could be reinstated by
regulation or the System Operator.
Default Access Controls
1.5 The Australian Greens believe default access
controls, which are likely to be used by the majority of PCEHR consumers, are
of critical importance. As the Australian Medical Association noted, they are
left up to the rules and System Operator to define. This leaves a crucial part
of the implementation undefined.
1.6 It should be clear that these rules must be
developed in a transparent way that involves community input. Some baseline
controls could be specified in the bill. Alternatively, we accept that the
default access controls are better defined in the Rules and not by the System
Operator and this could be made clear.
Definitions
1.7 The questions raised by witnesses and submitters
around definitions are valid. Medibank pointed out that the definition of
healthcare omits preventive health and is focussed on illness. The Greens
support including preventive health in this definition.
1.8 This might also help clarify the definition of
healthcare provider and allow the flexibility to include preventive health
professionals such as dieticians in the system in future.
Use of data in research
1.9 As noted by Medibank in their submission, the data
collected in the PCEHR system as a whole could be of significant value to
researchers and health planners. The Greens note that there are significant
operational and privacy issues around accessing aggregate and de-identified
data for research purposes.
1.10 However, given the potential value of the data to
the public health community, the bill could make some provision for research
uses of system data if privacy issues can be adequately addressed. Explicitly
mentioning this in the bill may reduce the liability of the System Operator and
encourage it to explore methods to anonymise and aggregate PCEHR data.
Australian Greens Recommend
Recommendation 1
1.1 The bill should be clear in section 15 that the ability of consumers to
further protect the privacy of their data may be enhanced by the Rules or
System Operator.
Recommendation 2
1.2 That section 15 (b) (ii) of the bill be amended to require the System
Operator to consult (with the independent advisory council or other community
representatives) in the development of default access controls.
Recommendation 3
1.3
That the definition of "healthcare" be amended to include
"preventative health".
Recommendation 4
1.4 That the bill be amended to make explicit reference to the use of
anonymised, aggregate data from the PCEHR system for research and public health
purposes.
Senator Rachel Siewert
Deputy Chair |
Senator Richard Di Natale
Senator for Victoria
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