E-health stricken with privacy and software lurgies

Analysis: Senate hearings begin.

With less than five months before launch, differences between interest groups in the planning of the Federal Government’s $466.7 million personally controlled electronic health record (PCEHR) will be aired today before a Senate Committee.

Submissions from medical associations, privacy groups, rural and remote services, and the medical software industry collectively raise questions over privacy, standards and the ability to service remote regions.

A common view is that the July 1 launch date is too ambitious.

Opt-in or opt-out?

Lack of broad acceptance of the privacy aspects of the PCEHR is notable.

The official policy is that participation in the scheme is up to the individual patient. PCEHR users will have the ability to control which parts of their health records are shared with whom, and can "deactivate" their PCEHR at any time.

While this opt-in provision allayed concerns raised by privacy groups, it disappointed the Australian Medical Association (AMA). The AMA [pdf] questions whether it weakens PCEHR’s usefulness to such an extent that many doctors will not use it.

“Opt-in design undermines the goals of the system,” the AMA’s submission states. It argues that experiences of opt-in systems from Australia and overseas indicate that adoption amongst consumers will progress slowly.

“We are concerned that if medical practitioners search for a PCEHR they will often not find one for their patient," the AMA said.

"This may deter future attempts by medical practitioners and consequently lead to a very low uptake of the proposed PCEHR by medical professionals.

"We predict it will be many years before the PCEHR becomes ubiquitous in health care.”

The AMA challenged the Government to reveal forecasts of anticipated uptake.

“If we can expect that around 10 percent of the population were to opt-in during the first years of operation of the PCEHR, would that be enough to achieve the objectives in the Bill?” its submission asks.

The Department of Health & Ageing (DOHA) [pdf] says adoption is exceeding early targets.

But the AMA counters that the numbers would be far higher if the default position is that a patient agrees to have electronic records on the system, subject only to a request to be excluded.

The Australian Privacy Foundation [pdf] expressed alarm with this approach.

“If the PCEHR system is 'opt out' then all health practitioners will be forced to register for the PCEHR system as health providers and citizens alongside individuals from the broader community," the foundation said.

"The current PCEHR system architecture cannot function as an 'opt‐out' system.”

Software compatibility

The Medical Software Industry Association (MSIA) [pdf] warns that time is running out for the spectre of existing medical software applications to achieve compatibility with the final PCEHR standards.

MSIA notes that the healthcare identifier service had been in operation for over 18 months yet “clinically meaningful” usage is “extremely low”.

Most identifier access has been through a National E-Health Transition Authority (NEHTA)-sponsored first wave initiative to inject the numbers into general practitioners' desktop software.

“This has been done largely without the consent or cooperation of the software vendors,” the MSIA notes.

The MSIA also attacks DoHA over the state of a software developers resource centre portal it launched in November last year.

“The site is currently under urgent review for a range of useability issues (which includes the inability of many vendors to sign up to the draconian Terms and Conditions)," the MSIA alleges.

While DoHA promised the bulk of the specifications necessary for PCEHR participation will be available to industry by the end of December last year, the MSIA notes that up to 20 percent of the 5346 pages of specifications are outdated or not final, despite assurances to the contrary.

Some documents had future review dates, known but unresolved issues or were still going through a “tiger team” process.

Among its recommendations, the MSIA urged the Government to reduce the scope of the e-Health initiative for the July 1 release and defer some of its less mature elements such as Australian Medicines Terminology, Health Terminology (SNOMED), and Consolidated View.

Link saturation

The Aboriginal Health Council of Western Australia (AHCWA) raised concerns over the amount of data to pass over domestic satellite links to and from outback clinics.

The council flagged problems with system saturation as the PCEHR systems compete with other data on already full links.

The government’s Office of Aboriginal and Torres Strait Islander Health (OATSIH) - which sits within DoHA - has just been rolled out a new nationwide software reporting system for online health reporting, known as OCHREStream.

But the Aboriginal Medical Service sector is yet to learn whether this new reporting mechanism is compatible with the PCEHR.

Aboriginal Medical Service healthcare providers also use two major software systems Communicare and MMex.

While Communicare is compatible with the PCEHR system through a coming software release, it is unclear to what extent MMex will be compatible.

The Senate Committee is due to report on the PCEHR legislation by February 29.