THE Consumers Health Forum has called for greater accountability
and independence in governance arrangements for the Gillard
government's personally controlled e-health record system, due for
launch on July 1.
The peak body also wants strong consumer controls over access to medical
records, and suggests reconsideration of the opt-in model in its
submission to the Senate inquiry into the PCEHR Bill and related
matters.
Former health minister Nicola Roxon introduced enabling legislation
for the $500 million PCEHR program into parliament late last year,
without addressing key governance issues raised in earlier
consultations.
While the Information Commissioner will be able to investigate
complaints of breaches of patient data under the 24-year-old Privacy
Act, the present patchwork of state and territory health and privacy
laws will still apply where medical records are held in local systems.
The legislation also authorises the use of the Healthcare Identifiers
service, operated by Medicare, but because arrangements for an oversight
authority are yet to be formulated, the federal Health secretary Jane
Halton will act as HI operator for the foreseeable future.
The HI system operator will establish and maintain the national records
indexing service for the PCEHR, with advice from a proposed
jurisdictional advisory committee and an independent advisory council.
The CHF notes that while this may be expedient in view of the tight
timeframe for the launch, "consumers are calling for a statutory
authority independent of the Health department, Medicare Australia and
the state and territory governments".
"We suggest a review of the interim arrangements after two years, as
that would allow sufficient time for preliminary work to establish an
independent authority while also giving consumers an opportunity to
provide input into the long-term operation and governance of the
system," its submission says.
Last month, the Pharmacy Guild said it was greatly concerned
that the "appropriate governance is yet to be determined (for the
PCEHR) and the Health secretary will fulfil the role of HI system
operator".
"Governance of such an important system should not be vested in a single
person," the guild said in response to earlier consultations on the
draft bill.
"To proceed without key components in place will greatly increase the risk for patients and participating health professionals."
Meanwhile, the CHF expressed "extreme disappointment" over the weakening
of access controls including the ability for consumers to mark a
clinical document as "no access".
Doctors groups had objected to patients' ability to conceal certain
information, or add or delete documents from the system, warning that
this would undermine medical providers' confidence in the integrity and
completeness of PCEHR records.
But the CHF says there has been "unanimous consumer support" for reinstatement of ‘no access' controls.
"Many consumers describe this issue as a ‘deal-breaker' in terms of their participation," it says.
"We acknowledge that limiting access is challenging, and there are
potential consequences where access to clinical information is limited.
"However, consumers are likely to withdraw their participation, refuse
to grant access or simply withhold information in the absence of this
feature."
On the other hand, the CHF has changed its position on the opt-in model
of registration, saying an opt-out system would be more successful.
"The full value of the PCEHR will only be achieved if there is
widespread adoption across the population, to ensure there is sufficient
data to make the system worthwhile to healthcare providers," it says.
"An opt-out model in which consumers are allocated a record and provided
with points of access could enhance personal control and increase the
likelihood of participation."
The CHF notes that initially, the system will only provide access to a
limited range of documents – shared health summaries, event and
discharge summaries, and some consumer-entered information.
"Existing electronic records systems in hospitals, general practice and
other clinical settings already offer these features, and there is no
immediate benefit associated with incorporating this in the PCEHR," it
says.
"This is compounded by the fact that features initially thought to be
straightforward inclusions, such as results of diagnostic tests, will
not be available as planned."
Radiology representatives have told the Senate inquiry that work on the integration of diagnostic images is yet to commence, despite the sector's advanced ICT capabilities.
The CHF is also concerned that, as yet, there is no strategy to drive consumer and clinician adoption.
The Senate Community Affairs committee is expected to hold public
hearings on the PCEHR program early next month, and is expected to
report its findings by February 29.
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