[LINK] OzIT: 'Consumers 'ignored' in e-health policy ...'
Roger.Clarke at xamax.com.au
Thu Mar 24 21:05:22 AEDT 2011
Consumers 'ignored' in e-health policy, says privacy foundation
Australian IT March 24, 2011 7:00PM
THE Australian Privacy Foundation has accused Health Minister Nicola
Roxon of reneging on her promise to consult with consumers over the
design and operation of the $467 million e-health record project.
APF chair Roger Clarke said that given the advanced state of the
project, with work already under way at lead implementation sites,
"we are raising a necessarily urgent concern about the governance of
this major initiative".
"Unless you take action right now, key decisions will be made in an
unsatisfactory manner, without consumer advocacy involvement," he
said in letters to Ms Roxon published on the APF website.
Mr Clarke said 20 days had lapsed since the letter was sent to Ms
Roxon and 16 days after a follow-up, there was still no word from the
"We seek your urgent attention to the matter, in order to avoid such
an outcome. If you decline to do so, then, far from fixing the
problem, you would be breaching the undertaking you gave three months
ago, and endorsing the exclusion of effective consumer consultation,"
At the National e-Health Conference in Melbourne on November 30, Ms
Roxon said the Health Department would "take the lead role in
ensuring comprehensive stakeholder engagement across the program".
"The arrangements that we are putting in place will ensure there are
robust assurance and governance provisions around the implementation
of the program," the minister said.
"And yes, that governance will include consumers. We will work with
all parties to ensure that a strong governance framework is in place
ahead of the national system being delivered."
Dr Clarke descirbed the whole process as a "travesty".
"The National e-Health Transition Authority ran a loosely-structured
roundtable in November, and three sessions in January and February,"
"But despite requests from participants, those events concluded
without a permanent group being established. The department,
meanwhile, has done nothing to ensure that the group's expertise and
commitment is utilised."
Dr Clarke said the advocacy groups had deep knowledge of the needs of
various categories of healthcare consumers, and the practicalities
and subtleties involved in sharing medical data.
"The complexities of the health sector are so great that the general
public will not get down to the devil in the details," he said.
"Ongoing engagement with consumer advocates is therefore critical to
the PCEHR's success."
Ms Roxon's office has declined to comment on the issues raised by the
APF. Nor has the minister responded to The Australian's recent
requests for further information on the consultation process.
In January, Ms Roxon promised to release a public discussion paper on
the PCEHR, but this is yet to be published.
At the time NEHTA was holding the consumer reference group sessions,
chief executive Peter Fleming told The Australian a consultation
process was being established with the Consumers Health Forum -- now
a corporate entity in receipt of government funding for a range of
consultations, including the PCEHR.
Health gave the CHF a $10,000 grant to hold a members-only workshop
in mid-February to work out how NEHTA should engage with consumers.
The Deloitte report on the outcomes of the Melbourne e-health
conference is also yet to released - three months after the event.
Dr Clarke said the present situation was a reflection of government
agencies' long-standing opposition to meaningful engagement.
"They continue to treat consumer reps with contempt," he said.
"We're asking Ms Roxon to instruct the department to recover the harm
done and institute a long-term consultation process.
"As it stands, a senior minister is not even showing lip-service to
the Gillard government's nominal policies relating to open government
and the enhancement of privacy protections."
Disappointingly, the sessions this year had at last achieved some
genuine interaction on substantive issues, and a great deal of effort
had been invested by all parties, he said.
But both NEHTA and the department had "effectively reserved the right
not to continue the dialogue".
"For more than a decade, consumer groups have been marginalised --
invited to occasional meetings, but with no coherent plan and no
follow-through," Dr Clarke said.
"Participants have learnt to be distrustful of both Health and NEHTA,
because there's been no framework for consultation and events have
been held sporadically and without any documents to pump-prime
"Then there's the continual staff turnover and absence of any
corporate memory, and the evident lack of incorporation of consumers'
perspectives in the emergent design.
"Advocates have become deeply frustrated with this state of affairs.
It is imperative that the backlog in consumer representation be made
good very quickly."
Roger Clarke http://www.rogerclarke.com/
Xamax Consultancy Pty Ltd 78 Sidaway St, Chapman ACT 2611 AUSTRALIA
Tel: +61 2 6288 1472, and 6288 6916
mailto:Roger.Clarke at xamax.com.au http://www.xamax.com.au/
Visiting Professor in the Cyberspace Law & Policy Centre Uni of NSW
Visiting Professor in Computer Science Australian National University
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