Patients need place at PCEHR review table: consumer groups

Consumer groups have welcomed the announcement of a review into the PCEHR, saying they look forward to advising the inquiry from a consumer perspective.

The outgoing CEO of the Consumers Health Forum (CHF), Carol Bennett, said patients' needs and wishes are central to the success of eHealth and the organisation expects them to receive close attention from the review.

Ms Bennett said CHF was meeting with Health Minister Peter Dutton this week, and welcomed his willingness to engage with CHF on this and other issues.

CHF chair Karen Carey said that while much of the money spent on the PCEHR “has been wasted, what we do have is a platform”.

“The job now is to get doctors and patients to work together to make it happen,” she said.

Ms Bennett said consumers had told CHF that they want to participate actively in the management of their record, rather than passively enable providers to enter information.

“This is a record about an individual and the patient needs to be able to control access to it,” she said. “The experience with the PCEHR to date is the vast majority of consumers provide blanket access to records. A relatively small amount of information has been restricted by a small number of consumers.

“However, in our consultations, consumers have still strongly supported the use of access controls to moderate access to their PCEHR by participating healthcare organisations. This is one important measure to engender trust and support of the PCEHR by consumers.”

The Consumers e-Health Alliance (CeHA), a collective of consumer-oriented organisations including Cancer Voices Australia and the Cancer Council, Alzheimer's Australia, Arthritis Australia, the Leukaemia Foundation and various health consumer, carers and aged care organisations, is currently finalising a “manifesto” setting out its concerns with the PCEHR and related national infrastructure.

CeHA convenor Peter Brown said he believed that the current problems with the PCEHR can be traced back to the failure to follow sound governance recommendations that were made way back in 2001 with the Health Online report of that year.

“They have been endorsed by all successive highly paid consultants who have followed,” Mr Brown said.

He said the 2008 national eHealth strategy, which was agreed to by all federal and state health ministers and is currently being reviewed by Deloitte, had also highlighted the need for a national governing body with an independent chair and broad stakeholder representation to set priorities, direction and funding.

“It is unfortunate that these governance arrangements were not established from the outset,” Mr Brown said.

In its manifesto, CeHA said it “hopes momentum can be restored to the eHealth program by adopting the recommended collaborative approach and initially keeping things simple by building on what exists.”

CeHA has called on the new government to establish an independent national eHealth governing council that would bring all stakeholders together, “and to which a new operational entity tasked with implementation and operational responsibilities reports”.

“In this way, we can restart work on providing an efficient, useful, secure and economically funded patient information-sharing network that delivers important, agreed and prioritised benefits for all participants, which all stakeholders enthusiastically support.

“We need to build on the basic PCEHR infrastructure by incorporating the many practical systems operating across the currently siloed health sector, but this has to be done in a co-ordinated, connected way.”

Mr Brown said the four key stakeholder groups – clinicians, consumers, the medical software industry and government agencies – needed to be present at the same table at all stages of development and implementation.

Posted in Australian eHealth

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