The Australian Government’s approach to managing personally controlled electronic health records (PCEHRs) has resulted in poor governance and repeated project failure, a Senate committee hearing into the PCEHR Bill 2011 has heard.
Speaking at the hearing, Australian Privacy Foundation Health Sub Committee chair, Dr Juanita Fernando, pointed to issues of accountability, particularly from the National eHealth Transition Authority (NeHTA), the “retrofitting” of governance to the PCEHR, and a lack of independence of the governance of the health records.
“We are also concerned about ongoing project failure,” she said. It seems to us that there has been project failure after project failure.”
Fernando pointed to the Individual Healthcare Identifiers (IHI) project as having failed in its goal of allowing healthcare professionals to identify the right patient at the right time in the right place as an example of this failure.
“Standards are a mish-mash; there is no single standard — national or international — which applies right across the health sector. Rather we have borrowed from standards all over the place,” she said.
“There are also issues with ‘informed consent’ as nobody knows precisely what the roles and rights and responsibilities of all the players – patients, clinicians, administrators and so on are.
“There is also no workforce training… so nobody knows what a personally controlled electronic health record is, let alone some of the nomenclature that goes around the personally controlled electronic health record.”
Fernando said there were also concerns with patient safety due to failings in the software backend of the healthcare records to ensure that an individual patient had all their medical data under their record, or that a given patient’s Individual Healthcare Identifier was correct.
“Nobody seems to be held to account for project failure… and while it seems there may be one set of goals or one set of aims or accomplishments which are publicly released when a body such as NeHTA investigates… it ends with a whimper and the goal is never completely achieves,” she said. “In fact it is either not achieved at all or it slips off the agenda…”
The APF’s Dr Roger Clarke added that that a lack of consultation with privacy groups and consumer groups around PCEHRs had also contributed to the project’s failings.
“We have submitted to NeHTA and DoHA (Department of Health and Ageing) a number of times over the last three years trying to achieve engagement but failing because NeHTA and DoHA have refused to engage effectively and have excluded privacy and consumer advocates from any meaningful consultation practices,” he said.
“There has been no coherence and integration… so fixing each of these blunders that has been made serially by NeHTA and DoHA is very important.”
Clarke added that the government should put back its plan to roll out the PCEHR on 1 July due to the lack of proper governance arrangements.
“We do not believe there should not be a commencement of operation with the current governance arrangement therefore [the Committee] should recommend a completely different set of governance; an orthodox governance arrangement which doesn’t just have an advisory arrangement.
“[But] advisory isn’t sufficient. It has got to be a board which includes representation and which has responsibilities. I believe you have to rewrite it. It is the only way governance can be fixed.”
Clarke also warned that allowing the PCEHR to go ahead under the supervision of DoHA with a view to being transitioned to an independent body within two years would compromise the public interest.
“If you permit the bureaucracy to build [the PCEHR] the way it wants it then it will be set in stone, there will be so many things that are unable to be reversed because they have been designed to be unable to be reversed,” he said. “A bridging notion to me is caving in and allowing government agencies to do as they wish.”
Also speaking at the hearing Medical Software Industry Association (MSIA) president, John Hughes, put forward an alternative rollout schedule for the PCEHR project, following claims the system will be not even be close to completion by 1 July.
“A much simpler release one program could still deliver an effective valuable solution to the health sector by 1 July but only if the scope of that program is reduced significantly,” Hughes said.
“That is, if it is completed without many of the components that are currently included in that program, an essential element of that strategy would be a new 12-month timetable for the development of our standing functionality as release two of the PCEHR program with supporting funding and a delivery scheduled for the 1 July 2013.”
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