The following dreadful story appeared a few days ago.
Consumers 'ignored' in e-health policy, says privacy foundation
- Karen Dearne
- From: Australian IT
- March 24, 2011
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.
More here:
I raised this issue a while ago in this blog:
http://aushealthit.blogspot.com/2011/02/time-has-come-for-some-light-to-be.html
and essentially nothing seems to be changing.
Just why this is, is very hard to understand. I would have thought we might just have some more hope with the dramatic way in which an incumbent government has just been thrown out in NSW.
It might just be that those in DoHA and NEHTA might just realise that their political cover might be a good deal more flimsy than they had previously believed. It seems at least possible that with new directions from their political masters now being delivered to their NEHTA Board Members in NSW and Victoria we could see a demand for more accountability and transparency.
This has certainly been a mantra for the Liberal / Nationals in NSW.
If I was new Health Minister in NSW or Victoria I would be keen to ensure that what is going on in my name in NEHTA were things I was comfortable with. My view is that they should be alarmed, very alarmed at the way things are being conducted at present! If they don’t act reasonably soon they become complicit through inaction.
Proper consultation and proper transparency are vital in e-Health. They are not being delivered at present and really need to change, and fast! What has gone on with the most recent PCEHR release (Wave 2) only confirms that view to me. I hope the NSW Government is not going to pretend extending the failed HealtheLink Project as part of the PCEHR is a good idea!
On the NSW Election I see there is some e-Health comment.
e-health back in the spotlight for NSW
Telehealth technology centre at Nepean Hospital one of the first priorities for Coalition
- Georgina Swan (CIO)
- 28 March, 2011 11:51
Health services in NSW have been in limbo pending the outcome of the election, but the landslide victory by the Barry O’Farrell-led Coalition is likely to precipitate a frenzy of activity as the new government looks to implement its e-health policies.
Jillian Skinner will take on the role of Health Minister within the new government. During the election campaign, the NSW Coalition’s policies focussed on health issue prevention, openness, better management of chronic disease and increased community involvement in the running of the NSW public health system.
Now, the industry is beginning to call on the government to make good on its promises.
The world's largest health systems integrator, CSC, was quick to issue a statement welcoming the election result — and remind the new government of the Council of Australian Governments (COAG) and Federal Government’s plans for personally-controlled electronic health records.
More here:
For interest the full Health Policy is here:
https://www.nsw.liberal.org.au/policies/health
Interesting browse, as I suspect they will be around for a while!
David.
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