[LINK] OzIT: 'Consumers 'ignored' in e-health policy ...'

[Roger Clarke]

Consumers 'ignored' in e-health policy, says privacy foundation
Karen Dearne
Australian IT March 24, 2011 7:00PM
http://www.theaustralian.com.au/australian-it/government/consumers-ignored-on-e-health-says-privacy-foundation/story-fn4htb9o-1226027637719

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 
minister.

"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," 
he wrote.

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," 
he said.

"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 
discussions.

"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