Submission to the
Electronic Health Records
and Healthcare Identifiers:
Legislation Discussion
Paper
June 2015
Introduction
The Consumers Health Forum of Australia (CHF) is the national peak body representing
the interests of Australian healthcare consumers. CHF works in the public interest to
achieve safe, quality, timely healthcare for all Australians, supported by accessible health
information and systems.
CHF welcomes the opportunity to provide a submission to the Electronic Health Records
and Healthcare Identifiers: Legislation Discussion Paper (the Paper). CHF has been
engaged with the development of an electronic health record and system since its
inception, and our submission is drawn from submissions into previous inquiries into the
Personally Controlled Electronic Health Record (PCEHR) and similar issues, as well as the
experiences of our consumer representatives on key committees.
We are pleased that the Government recognises the importance of involving consumers in
the discussion for the way ahead for the electronic health record. CHF is committed to the
programme’s success, as the potential benefits to consumers, health practitioners, the
broader health sector and Government are plainly evident. We appreciated the number of
consultation sessions hosted by the Department in conjunction with the release of the
Paper, and have used those discussions to inform our submission.
Our primary concern is with the lack of detail in how the skills-based Board of the new
Australian Commission for Electronic Health (ACeH) will manage consumer and
stakeholder consultations going forward. Our view is that one of the key reasons for the
difficulties which faced implementation and acceptance of the PCEHR was a lack of good
planning and execution of consultations, and being transparent and accountable to
stakeholders. The success of the new electronic health record will depend strongly on a
robust link between the higher governance of ACeH and the stakeholder community. It will
be increasingly important as the opt-out trials are developed, underway, and assessed.
These are the primary issues that we have chosen to highlight in our submission.
However, while we have limited our submission to the views and effects the legislation
may have from a consumer perspective, we would note that a significant barrier to
widespread uptake of the PCEHR was reluctance on the part of GPs and other health
professionals to utilise the records. Having discussed this issue with consumers, consumer
representatives, GPs, and other stakeholders, CHF has found that a driving force behind
this reluctance could, again, be tied back to a poor consultation process and quality
controls over PCEHR that made it difficult to for professionals to implement in their
practices.
One of the key consequences of the poor consultation process was the inability to provide
proper incentives for GPs and other health professionals to utilise the PCEHR to its fullest
potential. This included the lack of a scheme for renumeration or, in the absence of any
financial incentives, grounding the PCEHR into continuing professional development.
Another critical issue resulting from poor consultation was the lack of communicability
between practices whose system architecture was dependent on different vendors.
CHF Submission to the Electronic Health Records Legislation Discussion Paper June 2015 - 1
While we’re aware of efforts by the National E-Health Transition Authority (NEHTA) to
address these issues, we have heard from several stakeholders that there are ongoing
concerns that the governance structure proposed for ACeH, if not supported by robust
consultations, may not be sufficient to resolve these issues going forward, as vendors may
not be adequately involved in discussions about harmonising electronic health programs.
While it goes beyond the expertise of CHF to comment on these issues in detail, we do
find that it is worth stressing that the electronic health record will only be of value to
consumers if it is used by their health professionals. As such, it is very much in the
consumer interest that the ACeH take serious efforts early in its establishment to resolve
technical conflicts and workflow issues that may generate resistance among health
professionals to using electronic health records in their practices.
CHF would expect ACeH to undertake early and robust consultations with health
professionals, consumers and vendors to develop an agreed-upon pathway to resolve
these issues.
Moreover, CHF finds that more will need to be done to integrate the electronic health
record into stages of health professionals’ education – both in their early, university-based
curricula, and as a matter of continued professional development. While this issue may be
viewed as a secondary consideration, the ability to promote use of electronic health
records as well as integrate it into students’ curricula is a matter that will need to be
planned for and addressed early in ACeH’s operations. It is vital to begin this education
and professional integration process before the My Health Record is launched with an eye
towards sustaining it over the long-term.
Finally, while we respect that it is beyond the scope of the proposed legislation, and as
such the Paper, to discuss the opt-out trials in detail, CHF would like to take this
opportunity to note that we expect the trials will be conducted in an open and transparent
manner that will allow the trial sites to share both best-practices and lessons learned
ahead of the independent assessment at the trials’ conclusion. Again, this should be
facilitated by good governance and consultation, and should be key principles in the
operation of the electronic health record beyond the trial period.
Legislative proposals: PCEHR system and HI Service
3.2
Governance
CHF supports the skills-based board as proposed in the Paper, and we would welcome
the opportunity to assist in searching for appropriate consumer representation. However,
we are concerned that the Paper limits its discussion of the proposed Board only to the
upper-most governance level without discussion of a robust structure to ensure
stakeholder and community-level consultations through advisory groups. The consultations
CHF and others have had since the release of the Paper have left the impression that
subsequent advisory committees established by the Board will be on a mostly ad hoc
basis.
CHF would support the legislation being more explicit about the advisory committees’
composition, their roles, and their responsibility to seek broader stakeholder and
community input to inform the Board’s decisions and any recommendations to
Government.
CHF Submission to the Electronic Health Records Legislation Discussion Paper June 2015 - 2
3.3
Participation
CHF was very supportive of the decision to transition the electronic health record into an
opt-out system, and we agree with the necessity of the trials to help determine the best
ways to ensure that an opt-out system is utilised by consumers and their health
professionals.
CHF understands that while the trial sites will be selected by the Government through
applications by and discussions with the States and Territories, we would strongly
encourage the Government to consult with stakeholders across the health sector regarding
trial sites under consideration.
This would allow the Government, the States and Territories, and ACeH to begin early
planning their communications with communities that might have large populations of
consumers with special communications needs (eg, culturally and linguistically diverse
groups) and to allow stakeholders to be in a better position to assist in general and specific
communications about the trial sites.
The success of a communications strategy leading up to the trials’ implementation is vital,
as a key element of the trial is in communicating to consumers about their option to opt-out
of having an electronic health record. Even with a two-month lead time, as each trial site
may have several hundred thousand consumers and hundreds of health professionals, the
sooner stakeholders can be ready to assist the Government and ACeH in getting the word
out, the more likely the success of the trials.
CHF is concerned, though, that health care provider organisations and other health entities
will participate in the trial sites on an opt-in basis.
CHF understands that a key aspect of the trial is to understand which incentives may work
to encourage professional uptake of the electronic health record. There is presently a risk,
owing to misconceptions and mistrust of the electronic health record’s immediate and
potential utility, security and reliability, that uptake on an opt-in basis may be too low to
sustain the trials’ operation. This could hinder the ability for the health sector and
Government to better assess how consumers’ and health professionals’ views,
expectations, and overall uptake of the electronic health record, and what lessons could be
learned in providing for a national roll-out strategy.
As such, CHF’s preference would be to expand the opt-out aspect to health care providers
within the trial areas. We strongly encourage the Government to consult with health care
providers to develop alternatives to relying on an opt-in strategy for health care providers
within the trial sites that may facilitate earlier and broader uptake of the electronic health
record at practice sites within the scope of the trials. This may also be an opportunity for a
broader education strategy of health professionals and consumers to be used to dispel
misinformation and promote utilisation on an opt-in basis, whether by consumer demand
or by health professionals on their own initiative.
3.4
Obligations of parties
While CHF respects the desire to make the administrative side of the electronic health
record as least burdensome on health practices as possible, it is imperative that those
entities in whom consumers entrust their health information are keenly aware of their
obligations to keep that information safe.
CHF Submission to the Electronic Health Records Legislation Discussion Paper June 2015 - 3
CHF supports the streamlining of legislation to make it clearer to health professionals and
other service providing entities their privacy obligations under relevant laws in lieu of a web
of service level agreements.
However, the Government, through the ACeH, the Australian Information Commissioner,
and Australian Health Practitioner Registration Agency, ought to undertake a campaign to
ensure and certify that health entities have educated their employees about the changes in
legislation and are able to uphold their obligations under the law to protect consumers prior
to their registration to use the system.
CHF also strongly supports amending the legislation to make the reporting of data
breaches to the Australian Information Commissioner more consistent and mandatory
across healthcare providers.
Although penalties for misuse of information were covered in the next section of the Paper
concerning privacy, CHF would support the inclusion of criminal penalties in the legislation
for certain cases of gross negligence, deliberate misuse with intent to harm consumers or
misuse their information for other purposes.
This section of the Paper also asked for specific stakeholder feedback on whether there
are situations where a healthcare provider should not be required to upload certain
assessments and plans into the electronic health record.
We believe that it ought to be the decision of the consumer, not the health professional,
regarding whether certain information ought to be uploaded into the electronic health
record. As their record is intended to allow consumers to adjust their privacy settings to
restrict information from being visible to certain (or all) providers, the same principle ought
to govern their consent to have certain information uploaded in the first place.
Healthcare providers should perform due diligence and ask consumers of their preference
– informing them of their right to elect to not have certain information uploaded to the
record – but, again, the decision should ultimately rest with the consumer.
3.5
Privacy
CHF supports the proposal to move away from being prescriptive about the collection, use
and disclosure of information in the legislation to a principles-based approach. However,
this is dependent on our discussion in the previous section that healthcare providers ought
to be made aware of – and certified in their knowledge of – their obligations to protect
consumers’ privacy and the penalties for negligent use or deliberate misuse of such
information.
CHF also supports the proposed provision that System Operators be empowered to
suspend access to certain electronic health records if they perceive or are made aware of
a potential threat or breach of the record and the consumer’s privacy.
Concerning the recommendations for consumer notification when their record is accessed,
CHF supports the principle, but believes there ought to be robust testing of the actual
mechanism. While it may not appear as though this would be a burdensome provision to
the layperson or infrequent user of the health system, for a consumer managing a complex
or chronic condition, or who is hurried into an emergency room setting, the number of
notifications may soon become overwhelming, irritating, and diminish their desire to
continue participation in the electronic health system. This could be addressed by
CHF Submission to the Electronic Health Records Legislation Discussion Paper June 2015 - 4
summarising the records’ access in a single, regular notification, or limiting the number of
notifications when a high volume is identified. Again, strategies should be undertaken in
consultation with consumers, vendors, and other stakeholders.
Conclusion
CHF is committed to the success of the electronic health record, as the potential benefits
to consumers, health practitioners, the broader health sector and Government are plainly
evident. CHF was very supportive of the decision to transition the electronic health record
into an opt-out system, and we agree with the necessity of the trials to help determine the
best ways to ensure that an opt-out system is utilised by consumers and their health
professionals.
However, the electronic health record will only be of value to consumers if it is used by
their health professionals. As such, it is very much in the consumer interest that the ACeH
take serious efforts early in its establishment to resolve technical conflicts and workflow
issues that may generate resistance among health professionals to using electronic health
records in their practices.
We have noted that that a significant barrier to widespread uptake of the PCEHR was
reluctance on the part of GPs and other health professionals to utilise the records. A
driving force behind this reluctance could be tied back to a poor consultation process and
quality controls over PCEHR that made it difficult to for professionals to implement in their
practices, and that allowed the spread of misinformation that eroded confidence in the
system overall.
The success of a communications strategy leading up to the trials’ implementation is vital,
as a key element of the trial is in communicating to consumers about their option to opt-out
of having an electronic health record. However, on the provider side, in the absence of
expanding the opt-out provisions to providers, we strongly encourage the Government and
ACeH to consult with health care providers to develop alternatives to relying on an opt-in
strategy for health care providers within the trial sites that may facilitate earlier and broader
uptake of the electronic health record at practice sites within the scope of the trials.
CHF supports the skills-based board as proposed for the ACeH, but would support the
legislation being more explicit about the lower-level advisory committees’ composition,
their roles, and their responsibility to seek broader stakeholder and community input to
inform the Board’s decisions and any recommendations to Government.
CHF Submission to the Electronic Health Records Legislation Discussion Paper June 2015 - 5