My GP makes splendid use of computers. He keys in information during consultation. If he issues a prescription, or referral to imaging, pathology or other specialist it prints from his computer. Given the chronically appalling nature of the average GP’s handwriting, I have greater confidence that the pharmacist will not misread quantities or drugs from the printed script than a handwritten one. Given he backs-up daily, I am also more confident he will be able to recall pertinent parts of medical history more easily than shuffling through paper and he certainly can retrieve my file instantaneously on the screen in front of him if I phone him whereas a GP dependant on a paper file has to wait for someone to retrieve it.
But this is only part of the story. It should go further, but does not. There is an enormous lost opportunity here. The information is held in my GP’s hard drive and goes no further.
Many doctors would think this is a good thing. Some argue that the doctor and not the patient owns the information. Most doctors argue that patient-doctor confidentiality is essential to good medicine, and no information should leave the surgery without the consent of the patient. True, up to a point, but there is another way of looking at it.
Once identifying information is stripped away, there is an enormous information resource which can and should be used for great public good. The information can be used for research, to improve treatment, to identify treatment failures, to identify public-health threats earlier than at present, to identify side-effects of treatment and so on. All this can help reduce suffering and costs.
A lot of information is already kept by the Health Insurance Commission, but mainly as an economic, rather than health, tool and it is not very detailed. The commission can monitor the number of payments for particular scheduled items and prescriptions down to state level. But vast amounts of clinical notes are quarantined in scrawled notes in surgeries or on the hard drives of those few GPs who use them.
Simple software linked to a central database could report such things as side-effects of drugs, poor or no response, anti-biotic immunity, successes, disease incidence and so on.
This week Professor Bob Douglas of the National Centre for Epidemiology and Population Health further warmed to his theme about the need to keep an eye on the public interest when delivering the Sax Oration at ANU. He argues that our health system is geared to dealing with individual patients, not populations. “”Our information and laboratory systems serve the clinician and the individual patient; not the community. And yet it is at the community level that future communicable disease threats will come.”
He warns against complacency on that front.
Baby boomers, like me, have led a charmed life medically. Good water and sanitation, anti-biotics and vaccinations have combined to wipe out most communicable diseases. Other than colds and flu (“”there’s a lot of it going about”), we tend to see our medical problems individually. But with increased population, chemical destruction of ecosystems and microbes becoming immune to over-used anti-biotics the threat of communicable diseases is increasing, as the AIDS virus testifies.
The individual approach to medicine has also strengthened the idea of the doctor-patient relationship being utterly private and sacrosanct. Coupled with increasing paranoia about privacy it can act against the public interest and therefore the interest of all individuals. There is a public input here that warrants a public output. Obviously no-one wants there medical history blurted to the public and there should be watertight arrangements to ensure that should not happen. But details of disease and treatment stripped of identity are too valuable to be kept quarantined. And it may become too dangerous to public health.
At present, the privacy culture suggests everyone has an automatic right to demand that any information they give to anyone should not be used for a different purpose without permission. It is a medical researcher’s nightmare and acts against the public interest. On average, we consume about $62,000 each of taxpayers’ money in health care in our lifetimes. We spend $50 billion on health each year, the lion’s share of it public money. Maybe we should have an implied condition here. If you want the government subsidy for treatment, in the public interest, you should allow information about that treatment (stripped of identifiers) to be used in research and for public-health matters.
The software is available to strip identity and its use could be administered by privacy commissioners. If you don’t want anonymous information to be used in public health, don’t accept the public subsidy.