Electronic health records review set to ignore consumer interests

Doctors’ interests will be represented at the inquiry but it seems consumer interests could be ignored. Brian/Flickr

The rollout of the Australia’s Personally Controlled Electronic Health Record (PCEHR) has encountered various problems since its inception. But it all got worse when the new health minister, Peter Dutton, recently ordered a review of the project. Unfortunately, it seems consumer interests may be neglected in the inquiry.

The PCEHR contains a summary of your health information such as diagnoses, allergies and medications. It’s expected to improve health outcomes, save time and money, reduce medical errors, and allow people to be more involved in their own care.

Whether you choose to have a record is up to you, as is what goes into it, and who can access it. This secure online record, according to the eHealth website, can be shared with your doctors, hospitals and other health-care providers “to provide you with the best possible care”.

Some people will not register for a PCEHR because of poverty, social instability or major family stress. Others have different priorities or privacy concerns that override their interest in sharing their health information.

A whole lot of trouble

In recent weeks, it’s become apparent that the PCEHR project is in a lot of strife.

There’s been low uptake by consumers (about 900,000) and by health providers (about 5,500 registered in the system but only a few hundred doctors uploading shared health summaries). And its cost to date is estimated at A$1 billion.

The new federal health minister, Peter Dutton, has announced an inquiry into the system. The review panel consists of three people – Richard Royle (vice-president of the Australian Private Hospitals Association), Dr Steve Hambleton (president of the AMA), and Andrew Walduck (chief information officer of Australia Post).

According to the health minister, the panel’s expertise with “information technology, patient and medical services and business administration” is “the right mix to put the electronic health records program back on track.”

Doctors’ interests are going to be represented in the inquiry by the Australian Medical Association (AMA), but it’s not at all certain that consumer interests will be.

The AMA is on record arguing that the control of the electronic health record should be taken away from patients and handed to doctors, and have taken the same position in their submission to the inquiry. And doctors are demanding pay for writing and uploading patient health summaries.

It seems we’ve learnt nothing from the UK experience where a “technical and managerial focus” and a failure to think about ethics and values has been cited by my colleagues and I as a key factor in the failure of the country’s electronic health record system.

Balancing priorities

Who on the panel is going to be looking out for the interests of health consumers? Consumers’ ability to control who has access to their health information might lead health providers to distrust the records, but there may be much more at stake for the former.

A recent article in MJA Insight (a newsletter of the Medical Journal of Australia), for instance, discussed the significant body of evidence showing people with mental illness receive a lower standard of care when they visit a doctor for a physical illness. The author called this “diagnostic overshadowing”.

Diagnostic overshadowing happens when doctors make unwarranted assumptions about people with mental illness. Faced with the possibility of their physical symptoms being dismissed or attributed to current or past mental health issues, it’s understandable that people may want to be selective about what they share and with whom.

It’s vital health consumers maintain control over what goes into their record and who can access it. And that they can seal or lock off certain information.

Health providers are worried about patients being allowed to withhold health information. These concerns about making decisions based on records with incomplete information are unjustified because they can still engage with the patient during the consultation and ask questions.

The responsibility and cost of keeping patient records traditionally belongs to health providers, who will benefit from the expected time and cost savings of the PCEHR. Nevertheless, general practices are being given monetary incentives to encourage participation.

This seems wrong. Our overburdened health system should not be paying health providers to meet their professional and ethical obligation to maintain patient records and facilitate patient care. Health providers’ participation should, in fact, be made mandatory.

And who on the review panel will be looking at ethical questions such as who should pay for the implementation of the PCEHR? This is not just an economic question; it’s a question about priorities and rationing, requiring deliberation on costs and benefits and consideration of what counts as a cost or a benefit, and to whom.

The panel will invite submissions from the public and is reporting back to the minister by mid-December, 2013. Let’s hope consumers as well as doctors, software vendors and business interests are able to have a say.