Draft leak raises privacy concerns

PATIENTS will have limited control of their medical information, as a leaked document shows consumer access will be confined to a portal.

While Health Minister Nicola Roxon said consumers would "truly control" their personal electronic health records at her e-health forum last week, attendees did not see a draft concept of operations, showing a patient portal tacked on to a public/private providers' shared e-health record system (SEHR).

The confidential draft for the $467 million personally controlled e-health record (PCEHR) system was produced by the National E-Health Transition Authority, just before the forum.

The Australian has obtained a key system design diagram, which shows there is no mechanism for consumers to manage access by their doctors.

On the contrary, it appears providers will continue operating largely as they do now. An e-health analyst who examined the material said it revealed an SEHR with "an access path for the consumer" on top. "The diagram shows that while patients will have a window on some of their information, the routine flow between GPs, specialists, pathology and so on will remain unchanged," he said. "It will also remain as invisible to the ordinary consumer as it always has been.

"The present design also makes it clear that NEHTA plans -- at the very least -- to create a virtual repository of summary clinical information, with all the attendant hazards that brings."

Ms Roxon had said the PCEHR would not involve the creation of a "massive data repository". Instead, the system would link data held in GPs' systems, at the pharmacy and within hospitals.

The draft design shows there will initially be regional and state SEHRs set up for the three lead implementation sites, with a national repository and Medicare databases linked in at an early stage. Later on, a range of personal health record, registry and diagnostic imaging repositories will be made available through the service layer.

NEHTA clinical lead Nathan Pinskier told The Australian discussions on the shape of the PCEHR were still proceeding. "The model currently being proposed is one of a series of conformant repositories interlinked through an indexing system," he said.

"Certainly the databases will need high-level availability, and these could be regional or state-based repositories, pathology company databases or even health information exchanges run through Medicare Locals."

Dr Pinskier said NEHTA was working with the Royal College of General Practitioners on the core data set needed for a patient record summary.

"It's proposed that GPs act as the custodian of data for people who opt in," he said.

"There's no need to reach down to the GP's desktop; rather, GPs will push information up into the patient's repository of choice, where it will be indexed (for external retrieval)."

But the e-health analyst said it was unclear why medical providers would volunteer information from their own systems.

"Doctors are unlikely to bear additional costs and effort to provide patient information to the PCEHR unless there are some pretty significant incentives for doing so," he said.

"This issue has not been faced at any level of government to date.

"They will also want indemnity protection against accidental transmission of incorrect data, or information for which consent has not clearly been given."

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Concerns raised over federal workers' health care database

performance, said reducing annual premium growth by 0.1 percent for three consecutive years would save the FEHBP $1.25 billion over 10 years. The agency, on average, picks up 70 percent of the cost of premiums; workers pay the rest.

But privacy advocates aren't assuaged. They note that the data collected by OPM will include names, birthdates and other personal identifying information. In addition, they say it's unnecessary for OPM to set up its own database, since insurers already store health information.

"One of the big concerns here is the duplication," said Chris Calabrese, legislative counsel to the ACLU. Calabrese would rather see OPM use a "pointer system" to locate the information it needs. "Instead of having all the information in one database, if you want info on Patient 'X' a?¦ go directly to the record source," he said.

OPM officials counter that the privacy concerns are overblown. The senior OPM official said researchers won't be permitted to see personal identifiers. The agency had said earlier that the health data could be subject to the "routine uses" that apply to most federal databases under the Privacy Act of 1974. That means the records could be pulled by law enforcement officials in a criminal investigation or used in a congressional inquiry. Now, the official said, the agency is considering narrowing the list of agencies that would be granted special access to its records. Within OPM, the data will only be made available to analysts with the proper clearances, the official said.

In addition, the OPM official said asking insurance companies to independently analyze their own data would defeat a key purpose of the database - which is to compare health plans. For example, one health plan might charge more than another for prescription drug programs and the data might help OPM decide whether to drop one pharmacy benefits manager in favor of another. About 30 percent of FEHBP's spending goes for prescription drugs.

OPM's plans aren't unprecedented - TRICARE, the military's health care program, has data on its participants, and the federal Centers for Medicare and Medicaid Services keeps information on Medicare beneficiaries. But TRICARE, Medicare and Medicaid are public health programs; OPM's database will be collecting health information from private plans. The California Public Employees' Retirement System maintains a database on the private health plans it manages. OPM's project would be similar.

Kaiser Health News (www.kaiserhealthnews.org) is an editorially independent news service of the Kaiser Family Foundation, a nonpartisan health care policy organization that isn't affiliated with Kaiser Permanente.

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