And Australian Privacy Foundation chair Roger Clarke has attacked the National E-Health Transition Authority and federal Health officials for cutting consumers out of the design process for the $467 million personally controlled e-health record system.
"Because consumer representatives have had so little input, there's a very strong chance sensitive data will be compromised, and the system won't suit people's needs," he said.
"They are finalising the design within weeks but consumers were kept right out of the picture until January. Even then, community representatives have only been invited to three meetings."
But a Health department spokeswoman rejected the claims, saying there had been "ongoing consultation with consumer and privacy groups which had been constructive".
Dr Clarke said NEHTA was supposed to bring specific proposals on governance arrangements to the third meeting last Wednesday.
"To our serious disappointment, NEHTA did not do so," he has told both organisations in letters released yesterday.
"The department's presentation was long on aspiration and devoid of any concrete undertakings in relation to the issues." Both agencies had "mouthed platitudes" but had put nothing in place to continue the dialogue.
"During the whole of the last decade, discussions with Health and NEHTA about e-health have been a dreadful experience," he said. "There have been occasional discussions, but no coherent plan, no corporate memory, no outcomes and the mere pretence of consultation."
Dr Clarke said the recent forums -- attended by about 25 separate consumer and aged-care groups -- had gone "a considerable distance" towards a more positive attitude on both sides.
"But both organisations have failed to address the governance issues that have been put before you frequently and in some detail," he said.
"As a result, there is no arrangement for ongoing consumer representation -- despite the rapidity with which the project is moving."
Dr Clarke said putting health records into electronic form could be very good for patients, but the design was critical.
"Systems suit the people who design them, and in this case that's bureaucrats first, healthcare professionals second, and researchers and insurers third," Dr Clarke said.
The Health spokeswoman said the government's health reform plan released mid last year made clear that legislation and long-term governance arrangements would be in place by the second quarter of next year, before the PCEHR was launched.
"The government is serious about a personally controlled system in which privacy protections will be a key element," she said.
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Autor(en)/Author(s): Karen Dearne
Quelle/Source: Australian IT, 01.03.2011
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