Issue 30 / 12 August 2013

FROM at least the time of Hippocrates, the medical profession has advanced its knowledge of disease, prognosis and treatment by pooling information about patients with similar histories.

Doctors built their reputations as they acquired new knowledge and skills, helping them to attract more patients.

That “small business” model, with practitioners competing for patients, was nevertheless leavened by a cooperative commitment to share expertise through teaching and publication. Until well into the 20th century, that model was sustained — patients who could afford it would pay the doctor directly, while those who couldn’t pay would depend on the charity of a doctor or hospital, with clinical records the property of the doctor and/or the hospital.

Much has happened since then. The rise of scientific medicine and the public funding of health services have seen the charity hospitals of the past transformed into the overloaded state hospitals of today, although the small business model of private practice, transformed by fee-for-service funding through Medicare, still allows the doctor–patient relationship to be maintained.

Where has this left the worlds of record-keeping and research?

With the advent of modern computing, there are now many publicly funded databases with individual records which can be accessed or linked, most easily within a single agency or jurisdiction, while still preserving privacy.

WA has been a pioneer both in using state-based data, and in linking WA data to Commonwealth data. For example, the linkage of WA health records to Pharmaceutical Benefits Scheme records has provided important insights into birth defects and other adverse effects of medication.  

Medicare records, although primarily established for administrative purposes, can also be of great value for research. For example, by linking de-identified Medicare records of CT scan exposures to de-identified records of cancer registrations, researchers have been able to show an average proportional increase of 16% in subsequent cancer risk for each CT scan before the age of 20.

Despite the value of such research, and the robust measures that protect privacy, government agencies and data custodians have often been reluctant to release data, and many researchers report long delays with approvals. Indeed, some ethically approved projects of particular relevance to health have had to be abandoned.

The difficulties with data release may reflect resource constraints, mistaken concerns about privacy, or concerns about whether research carried out by an external party might reflect upon the interests of the government agency or jurisdiction involved. Some of these matters are considered in more detail in a recent Croakey blog.

What about patient records in community or hospital practice? Because services are now supported by public funds, there is a strong rationale for being able to access the records for public benefit research, provided privacy is protected.

Furthermore, because of the uptake of computer systems by most practitioners and hospitals, it is now feasible to capture and link such records. For example, MedicineInsight, in a pilot study, is collecting anonymous patient and clinical care information from general practices and linking diagnoses to medications, other services provided and clinical outcomes.

The personally controlled electronic health record (PCEHR), with patient consent, will eventually allow identified health records to follow each patient through the health system, while still preserving privacy.

In the longer term, as more people sign up, and as the quantity and quality of captured data improve, the linkage and aggregation of anonymous data from the PCEHR will provide a much richer vein of clinical information which can be mined to identify adverse drug events and other risks, to evaluate diagnostic criteria and treatments, and to improve the efficiency and effectiveness of the health system as a whole.

So today, despite the great public benefits that can flow from data sharing and linkage, progress is being delayed, in some cases because of residual privacy concerns, public inertia, resource limitations or the potential conflicts of interest between government agencies, different jurisdictions and the research community.

As part of a wider public discussion of issues around data release and data linkage, and to canvass cooperative principles that could guide our nation forward, the Menzies Foundation will host a data linkage workshop in Melbourne on 16 August. It will be attended by community, medical and media representatives, leading researchers, senior public servants and members of parliament.

Let’s hope it helps to overcome some concerns and open opportunities for even more data links.


Professor John Mathews is director of the Menzies Foundation and a professorial fellow at the University of Melbourne.

5 thoughts on “John Mathews: Benefits of sharing

  1. David Maconochie says:

    I thought this was a joke, but the Professor is serious!

    There is so much wrong with the PCEHR that it is hard to know where to start.

    We need to assume from the outset two fundamental things about human nature, first that if it is possible to do something wrong then it will be done wrong, secondly that there is no such thing as internet security (as Edward Snowden and Corporal Manning have eloquently taught us). So let’s start with this “goldmine” of research information. This roughly translated means “whoopee! another thing to sell on to Pharmaceuticals and any other company that is willing to put up the money”. It is only a minute step on to selling this to marketing companies around the world. You think I am exaggerating? Well how much spam do you get in your inbox despite always ticking that box “not to be used for marketing purposes”?

    How about the idea that access to a PCEHR will improve care because it will contain an accurate list of drug reactions? The only reason that the death rate from drug reactions is so low is that we check, check and check again. But if the concept becomes embedded in the group consciousness of the medical and allied professions that the PCEHR data is set in stone, guess what? Many of us will stop checking. Worse still, and again this is human nature, some of us will over-ride the patient in preference to “what the computer says”.

    Garbage in. Garbage out. My guess is that within 10 years the accumulated dross on the system will devalue the PCEHR to such an extent that it will be relegated to the same pocket in most patients’ wallets that are currently occupied by loyalty cards from now defunct department stores.


  2. George Margelis says:

    The PCEHR has great potential if we enable clinicians to develop new innovative models of care that can leverage it. To do this we need to first provide them with some basic health informatics education, provide the tools for them to develop new models of care, and then provide sustainable reimbursement models that reward them for delivering high quality equitable care.

    I believe the solution to the healthcare crisis we hear about lays in allowing our clinicians to innovate and be rewarded for their efforts.

  3. gazzainsight says:

    I agree with George Margelis about ”allowing our clinicians to innovate and be rewarded for their efforts.” Let’s not put the cart behind the horse. Innovative models of care should be patient-focused, and also facilitate clinician work practices, with the health informatics tools being designed to facilitate the models of care, rather than vice versa. 

  4. Department of Health Victoria Clinicians Health Channel says:

    The motor car and the internet are modern technologies that were first challenged as unnecessary and dangerous when first introduced. When used properly they are indispensible tools of great net value. The problems raised by David M need to be considered, but we should not scrap the idea because of the potential problems or because there is a risk of complication. If we avoided all risk, we would not prescribe antibiotics or perform potentially life saving surgery. PCEHR has the potential to bring benefit to those asked to treat patients that they have not previously seen and improve public health. We must engage and make sure it is used for the benefit of the individual and society!

  5. William McCubbery says:

    How interesting it is that concerns about intrusions into our privacy can be dismissed as “misplaced”! Surely the surreptitious but inexorable intrusion of population surveillance even in “The Land of the Free” should concern everyone. Why we should aid and abet it eludes understanding. The selective access to other people’s private lives without their knowledge or consent confers immense power on those who have access to it. The surreptitious merging of databases plunges us all into the world of the Gestapo and the Stasi. The security of data in a computer which is online cannot be guaranteed. Hopefully informed consent by the patient for the medical practitioner to expose such data in that way extends to endorsing the possibility that it is being placed on a potential broadcasting system. Banking institutions, government data banks and so on have been subjected to attempted hacking sometimes successful and for a time unrecognised. Unless every citizen has equal access to everyone else’s data this is a step towards establishing a fascist state.

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