Consumers call for reinstatement of 'no access' to PCEHR

The omission of a 'no access' provision in the proposed rules and regulations for the operation of the PCEHR is “far from ideal”, according to the Consumers Health Forum of Australia (CHF).

The proposed rules were released by the federal government last week and are open for public comment until April 11.

The rules reflect the position taken in the revised Concept of Operations (ConOps) for the PCEHR, released last year.

They suggest that there be two levels of access to the PCEHR – one a basic level in which the consumer would allow any registered healthcare provider to view any document on his or her PCEHR, and the other a 'limited access' level, in which the consumer could choose which providers are allowed access.

The CHF also wants a 'no access' rule, in which consumers could keep a document in their PCEHR but state that no one has access to it.

CHF CEO Carol Bennett and chairman Stephen Murby told a Senate hearing into the PCEHR in Canberra in late February that a no access provision had been in the original ConOps but had been removed from the revised version.

Ms Bennett told the hearing that the no access provision was a “deal breaker” for the consumers it had consulted around the country.

“We certainly hope that that issue will be addressed in the design of the system before it is implemented,” she said.

The proposed rules and regulations instead recommend an 'effective removal' provision, in which the consumer can apply to the PCEHR system operator – the Department of Health and Ageing (DoHA) – to remove a certain document from the record.

It reflects the provisions in the ConOps, which states that the document is not deleted but will no longer be considered part of an individual’s PCEHR and is locked.

According to the ConOps, a reason for removal is noted, preventing further access by an individual or their healthcare providers, including in an emergency.

“An effectively removed clinical document is only accessible to the PCEHR system operator and may only be accessed for legal reasons,” the ConOps states.

Ms Bennett told Pulse+IT that getting the access controls right will be essential for consumer confidence in the system.

“The rules and regulations seem consistent with the Concept of Operations but we had hoped to see more detail, particularly around the default access controls,” Ms Bennett said.

“The 'no access' provision allowed consumers to prevent healthcare providers from accessing part of the record, but the consumer was able to view the information and easily restore access.

“With 'effective removal', the consumer won't be able to access the record and will have to go through the system operator to restore access. It's far from ideal.”

Ms Bennett said the consumers involved in CHF's consultations were strongly in favour of a 'no access' control.

“Many consider that 'effective removal' is not an acceptable alternative,” she said. “For some consumers, removal of the 'no access' provision is a 'deal breaker' for their participation in the system.”

During the Senate hearings, Fionna Granger, first assistant secretary of DoHA's eHealth division, said the department had considered the no access provision but said the “best balance” was to allow the consumer to remove a document, saying it was “the equivalent of choosing not to tell a practitioner that information – rather than have essentially a locked box on the record that people then had to decide what to do with in an emergency”.

“The original healthcare provider who gave the service would still have a record of that and the consumer would still have whatever they kept privately as a record if they chose not to load it,” she said.

Ms Granger and DoHA deputy secretary Rosemary Huxtable said the decision was made so as not to make the system too complex for consumers.

Ms Bennett said some consumers will favour simplicity in their interactions with the system and will be comfortable with the default or basic access controls.

“For others, being able to control access to their record will be at the core of their trust in the system and whether they're willing to opt in,” she said.

Ms Bennett also said there is a large variation in consumer awareness about the PCEHR, which is due to launch on July 1.

“Our concern is that grassroots consumers don't know about the PCEHR and its potential benefits for their healthcare,” she said.

“However consumers sign up, they will need to have access to comprehensive, understandable information so that they know what they're signing up for and how they can control their information.”

She said consumer education about the PCEHR “is absolutely essential and has been strangely absent".

“Consumers need to know that this is coming and that from 1 July they will be able to make a decision about whether they want to be involved.

“At the same time, consumer education needs to set up realistic expectations about what the record will be on 1 July. We don't want consumers to sign up expecting all the bells and whistles and then be disappointed because the system is still evolving.”

Posted in Australian eHealth

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