E-health advocacy groups decries government secrecy

An e-health consumer advocacy group has joined a growing choir of those dissatisfied with the lack of communication from lead agencies surrounding implementation of the Federal Government's $467 million personally controlled electronic health records (PCEHR) project initiative.

The group, known as the Consumer Centred eHealth Coalition (CCeHC) and formed in 2009, claims to represent e-health consumers in issues of privacy, security and confidentiality related to the e-health project. It counts the Australian Privacy Foundation, the Cyberspace Law and Policy Centre, the Public Interest Advocacy Centre, Civil Liberties Australia and the Queensland Council of Civil Liberties among its members.

The coalition has remained quiet on the issue over the past year, but in a recent post on its website, the group voiced concerns over three community consultation workshops held by the Department of Health and Ageing (DoHA) and e-health managing agency National E-Health Transition Authority (NEHTA), arguing the sessions failed to provide enough detail around the project.

“We are growing frustrated with the NEHTA/DoHA led consultations process and skeptical about any useful outcomes incorporating consumer feedback,” the coalition wrote. “We ask for evidence the feedback has influenced a single aspect of the e-health experiment.”

The group claimed that voluntary feedback from industry and experts have been met by silence from the two government bodies, citing a pre-implementation risk assessment of the individual health identifier implemented in July last year by Medicare Australia. The coalition argued the agencies had yet to reply to the report, despite being funded by NEHTA.

The coalition argued the lack of documentation, including NEHTA's failure to release the draft concept of operations around the PCEHR to the public. Health minister Nicola Roxon in January pledged to release the document for public consultation - a milestone NEHTA is anxiously anticipating - but the e-health agency is currently exempt from freedom of information laws and cannot be called upon to release such documents prior.

The group also decried the National Authentication Service for Health, a secure messaging platform and key aspect of the PCEHR recently contracted to IBM Australia, as another example of the lack of transparency and poor timelines surrounding the project.

“The need for trust and the way this is acknowledged in formal government documents contradicts the fact all publicly available feedback has been ignored,” the group wrote. “We are nervous when it comes to trusting in a process that seeks consumer group feedback yet runs another in parallel.”

The government-funded process that was run parallel to the three workshops excluded a number of advocates in attendance at the public meetings, contributing to the scepticism of the coalition.

“We do not like wondering whether NEHTA's appeals to advocates re mutual trust will simply carpetbag consumer groups so we don't challenge the process in public. The IHI [Independent Healthcare Identifier] is useless to consumers presently and claims that the PCEHR will not be centralised are simply market-speak for not responding to advocates initial concerns re the IHI.”

The coalition joins outspoken e-health blogger David More, who criticised the timelines around implementation and evaluation of the PCEHR, as outlined in the workshops held recently.

Follow Chloe Herrick on Twitter: @chloe_CW

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