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.