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INTEGRATION of care is a common theme in health, with expectations that information technology will play a major part to bridge gaps in offering patients continuous, seamless care.
In 2012, the federal government launched the e-health record system, where patients could register for a personally controlled electronic health record (PCEHR). More recently, the government has announced moves to introduce an “opt out” rather than “opt in” system and will rename the PCEHR myHealth Record.
The PCEHR aims to provide continuity of care by providing full details of the patient’s health care, medical contacts and interventions. But is that enough?
Access to my own record finds it is designed to advantage health care providers rather than those receiving care.
I enrolled for a PCEHR over 12 months ago, but attempting to access it recently I found considerable difficulty working through its security codes and passwords.
A recent change of address was a difficulty. When challenged by security to insert the name of the primary school I had attended (there were three), I failed to choose the one I had nominated a year ago, so I was a source of some suspicion to the system.
Even with assistance from a patient helpline adviser, I was unable to consistently satisfy the security bars. I am a fading octogenarian, lacking all but the simplest IT skills, but we are the major users of health care these days.
Eventually able to search my file, I could find a Medicare-based listing of some of the doctors and dates I had visited, but no diagnoses or opinions; and dates of pathology tests and x-rays, but no reports. There was also a list of drugs obtained through the Pharmaceutical Benefits Scheme.
As a child, I had access to fully integrated, whole-of-life health care, from a solo GP in a Victorian country town. I had home care for pleurisy (a mustard plaster to the chest), whooping cough and measles (boiled water only for 2 days), and an appendicectomy at the local hospital (open ether anaesthetic by the doctor from the next town).
Our doctor knew us well (and everyone else in the town). Expectations were small, treatments were few and not dangerous, knowledge was meager, but patient trust in the doctor was high.
Today, no one person has the experience and informed judgement to manage more than a small portion of the complex world of medicine. So we shift from specialist to specialist, and a common patient complaint is “I don't know who is looking after me”.
The family doctor is not always informed as specialists send reports to each other, and opinions and results mount up in multiple medical records, few available in the PCEHR.
When I worked in Uganda about 50 years ago, patients carried their health record with them — so the concept of a PCEHR is used in many places.
A mother would present her child in my clinic along with a bundle of small papers retrieved from deep in the front of her bosom. It contained all the child’s former consultation entries and I would add my own, to see the record disappear again into the depths.
I learned the value of a patient-held record that was never lost and always available.
Integration happens best at the patient level, where a self-held record can be more complete than the current PCEHR as it will include medical reports and opinions, and encourage patients to become expert in their own diseases.
As each doctor makes entries to the record, the patient will be a full participant in care and will, in fact as well as in theory, “own” the patient-held record.
We need a new culture of cooperation between professionals and patients, something the current record does not provide.
It will be help physicians be less defensive of their special skills and status; it will take advantage of the opportunities of IT communication; it will respect the increasing sophistication of our patients, and greatly reduce the likelihood that patients will complain or sue because they were not informed.
Patients can carry not only all the appropriate data and current opinion of their medical situation recorded on an up-dated personal file (in a folder, on a phone or tablet, or USB stick), but also a renewed confidence in, and understanding of, themselves, their disease and their doctor.
Emeritus Professor Ian Maddocks is an eminent palliative care specialist, recognised internationally for his work in palliative care, tropical and preventive medicine. He was Senior Australian of the Year in 2013.
I have a patient who is treated by a neurologist for epilepsy. She has consistently refused to allow her diagnosis or her anti-convulsant drug therapy to be included in her electronic medical records or in referrrals to other specialists. Her liver enzymes are elevated as a result of her anti-convulsant treatment, which may lead to unnecessary abdominal imaging, and she may be at risk of adverse effects from these medications.
Giving her control of her electronic health record in this way is has created a hazard to her health. Her diagnosis impacts on her ability to drive a motor vehicle safely and to undertake certain forms of employment. I am sure that there are many other examples. I was told many years ago about a commercial pilot who developed type 1 diabetes and attempted to keep his diagnosis hidden from his employer and avaiation doctor, and did not inform the GP treating his diabetes of his occupation.
So I will not support or use a PCEHR while the information which it contains is controlled by the patient.
The idea of an easily available complete record available to the patient and anyone allowed access seems like a motherhood idea.
The medical profession has been convinced that it is faultless and any other ideas are either wrong or outdated.
Unfortunately the records are able to be accessed by nonhealthcare people for any variety of reasons.
For the readers of Sherlock Holmes the infamous blackmailer Charles Augustus Milverton would have not believed his luck as he had need to rely on disaffected servants etc to obtain information.
Like Dr Bennett I doubt if it will be working in the next decade.
Dr Mitchell is spot on. He does exactly what I did for 30 years in general practice, give a problem-oriented medical summary to each patient. Two problems:
1) I was not paid to perform the work. The only way that the extra time per consultation that was required could be funded was for the consultation fee to be at least double the Medicare rebate.
2) Being “just a GP”, i was far too often left out of the communication loop when it came to receiving patient information about health care delivered elsewhere. This, together with the lack of automation and assistance from software, degraded the quality of the medical summary I could provide. Nevertheless I received feedback repeatedly from patients and other health providers alike of the value of the summary provided.
Unless the GP is placed at the centre of coordination of patient care in partnership with the patient, properly paid and appropriately recognised as needing to receive all the relevant management information about patient care, the universally available, trustworthy medical summary will remain nothing more than a dream.
With the exception of controlled environments such as individual institutions or health organisations, attempted implementations of the universally available medical record, just like the PCEHR, have failed miserably at a huge waste of public resoureces.
I am in no doubt that there is a complete absence of political understanding of what is required to make a universal personal health record work. It’s not the technology – that has been available for 25 years.
The PCEHR and its incarnations are doomed therefore to failure. I would bet my house that a useful, universal personal health record will not be achieved in my lifetime.
The patients that benefit the most are those with chronic disease and who merit a Management plan, Team care arrangement and the over 75 with Health assessment. A half decent management plan lists diagnosis, medications, allergies and a plan. These are updated 6 monthly and Health assessments 12 monthly. These are the most useful documents on a patient electronic health record. A $50 incentive to GPs to put health assessments and management plans on PCEHR would make this thing work!
Dear Prof Maddocks,
Thank you for your timely article on medical information storage. I agree that we should have an easier way forward, in terms of health worker communication esp between many disciplinary teams, and in terms of the patient negotiating their way through the healthcare system.
This is why we have coordinators in the regional hospitals for cancer care, or as the Americans call them, the Navigators.
My concern is that giving freedom to medical records being carried around raises the issue of confidentiality loss. In the days of mobile phones, tablets etc our security of our identity is threatened every day. We already had GP practices ‘hacked into’ and hijacked their medical records. So what is to stop anybody corrupting files or displaying them for all to see as a way of obtaining money or revenge. Who takes the responsibility for such occurrences, and what happens to the well being of the patient.
While Queensland Health has had a lot of their own issues, they certainly had some successes on standardising their system. And perhaps we should all look at what each state is doing well, and then standardising this as a National Gold Standard.
But, while we all strive forward, we need to acknowledge our successes, eg Oacis system in SA, and look critically at our not so successful times, and learn from those lessons. Progress is slow, but in time hard work and commitment to team work will win the day.
Professor Maddock’s and Dr Mitchell’s wise comments are timely. The increasing sophistication of patients will accelerate as they read the reports and opinions of others. It should also encourage accuracy of records and hopefully disuade contributors from entering misinformation.
It would be great if patients could also share some responsibility for maintaining an up to date medication history- we are failing badly at great cost to patients and the poorly designed healthcare system. Any comments on why doctors are so reluctant to support the Patient Centred Care movement would be of great interest.
Are we trained to assume patients can’t cope with knowledge? The profession could do with more training on detechnalising issues – its time to assume all we write will be read and, with a little help, hopefully understood by patients.
At a presentation launching the Feds’ PCEHR, I dared to suggest that a suitable alternative was exactly what Ian Maddocks proposed, thus making the system “Patient Carried E- Health Record”. “E health” obviously because the full version is available on the practice computer. I proposed a patient summary including all the items normally found in a 75yr + Health Assessment, with any relevant path, X-ray etc.
Regrettably, the presenter failed the implied IQ test by dismissing the paper / USB alternate, which clearly didn’t suit the contemporary political agenda.
I have made wide use of health summaries of various sorts. Production is largely automated with MDW3, using templates. Management vignettes (eg gastroscopic findings) can be added in the comments section of the past history, and will thus appear. The Health Assessment type printout, usually 2-4 pages for an average octogenarian, is a treasure trove for any A&E doctor. You don’t need an Internet connection to read it.
Did I mention the PCEHR is inaccessible from overseas? My patient’s summaries aren’t. The best encouragement has come from comments made by interstate and overseas doctors treating summary-carrying patients. .
Derek Mitchell
Lindisfarne, Tas.