Australia embarked on an ambitious journey when it committed to developing a medical record that would go with each patient to whatever health care provider they consulted. “The eHealth record system — launched in June 2012 — is an electronic record for a patient that contains a summary of their health information.” http://www.nehta.gov.au/our-work/pcehr
This personally-controlled version, known as PCEHR, was rather akin to establishing a colony on Mars – maybe best to get to the moon first. The enterprise was reviewed in depth last year after faltering.
The new federal government maintains a modest investment in the project. According to ITNews : http://www.itnews.com.au/News/385351,budget-2014-what-is-funded-and-what-is-cut.aspx#ixzz33B822dHE “$140.6 million in 2014-15 has been allocated in the federal budget for the continued operation of the PCEHR system [now to be known as MyHR], while the Government finalises its response to the review of the system.”
As Sally Glass, a leading health and IT expert describes in eHealthSpace, a Website devoted to health-related IT, http://ehealthspace.org/news/pcehr-review-recommends-opt-out the review contains 38 recommendations. These proposals illustrate the complexity of the personal electronic record initiative. There is no low-hanging fruit. The previous governing agency for the personal record is to be replaced by the Australian Commission for Electronic Health (ACeH) that would answer directly to the Standing Council on Health (SCoH).
In describing Minister Dutton’s comments about IT and health at a recent conference, Glass writes that “The Minister referred to … strengthened governance of eHealth including “crystal clear” accountabilities; [an] opt-out model (which the Minister personally supports); improving clinical usability of the record to increase clinician acceptance and adoption; and how the [MyHR] is structured to hold personal, sensitive information.”
That is all good but the impeding complexities remain daunting. Consider, for example, the need for MyHR to use a nationally-uniform set of names for medications. That may sound easy, but given the vast array of prescription and non-prescription drugs, it isn’t. And then there is the question of incentives to use MyHealth. How much will doctors be paid to use it and what happens if they don’t?
No-one should ever have imagined that introducing a personally-controlled electronic medical record would be simple. So many jurisdictions have an interest in being part of the action. So many different health service providers – hospital doctors, allied health professionals, community based practitioners to name several – would reasonably expect to have access to such a record and to be able to add to it details of their care. The IT environment of each provider at present is different and MyHealth must interface with each. The ‘personally-controlled’ aspect means that concerns about privacy and confidentiality – what a person may wish to have in his or her record and what differential access the or she may wish to extend to different providers – are all legitimate and must be built into the functionality of the record.
The personally-controlled record could even be a health hazard. Trisha Greenhalgh, a professor of primary health care interested in the sociology of health system changes and who works at Barts and the London School of Medicine and Dentistry, comments:
“Failed” electronic personal record programs are common and even “successful” initiatives are typically plagued by delays, escalation of costs, scope creep, and technical glitches, including catastrophic system crashes. [By] distracting staff into data entry and standardized protocols, computerized records jeopardize the human side of medicine and nursing and distributed record systems bring unanticipated hazards, including (but not limited to) the insidious growth of the surveillance society.”
There are simpler models of electronic records that we might turn to first, the equivalent of putting a man on the moon rather than a family on Mars. The personally-controlled version contrasts with much simpler electronic records that are held by, say, a hospital or a general practitioner, for patients who consult them. In both places there will be an institutional IT system into which the record is automatically integrated. The patient does not control or own that record and does not determine which health professional ads what or sees what is in it. The safety of confidentiality, long practised for paper-based institutional paper records, can be readily extended to electronic records.
The logic of starting not with the entire population but inside systems of health of a much smaller size, where managerial control is feasible and electronic records are part of an institutional IT system, such as in the Kaiser Permanente managed care system in California, suggests an alternate pathway. These have not proved easy or cheap to establish, but now, in the case of Kaiser, all six million enrolled members have a record that enables coordinated care, from general practice through the hospital and back into the community, includes drugs and tests and enables prevention. Enhanced communications using secure messaging allow community members rapid and effective access to carers. The medical centres are paperless. We are about 20 years behind such achievements.
In pursuing the highly desirable goal of everyone having an electronic medical record we may need to proceed bit by bit (or byte by byte). If investment in IT systems for hospitals progressed effectively, that would be an excellent beginning. Much is happening there, as in general practice, and efforts to bring these different systems together may well be rewarded with the achievement of personal medical records almost as a spin-off. That may be the best investment proposition.
Stephen Leeder is a professor of public health and community medicine at the University of Sydney.