The Federal Government is introducing a new system for electronically managing health information – and given its botched implementation so far failure is almost guaranteed.
Called the PCEHR (personally controlled electronic health record) the idea is to give patients access to an electronic summary of their health records that can be shared among healthcare providers who will also update the record when they have contact with the patient.
The PCEHR will include information about the patient’s medications, test results, medical history and any other health-related information.
Having a PCEHR will be optional. Once a patient has decided to have one (and provided it is supported by the doctors and health services the patient uses) he or she can apply for a user name and password through Medicare or another approved agency.
The PCEHR will be web-based, so patients will be able to log in and view their entire PCEHR record. The patient will also be able to control who gets to access her or his information. Providers who have permission will access the information using their own username and password, perhaps in combination with a smart card or special USB key.
A patient may also be allowed to hide parts of her record and it is this feature amongst many that has started the alarm bells ringing among doctors facing potential liability claims after basing decisions on incomplete information.
The purported benefits of PCEHR
Sharing your health records between providers, the theory goes, increases your mobility and improves their ability to treat you without having to get the information from potentially multiple sources.
This is especially useful if you are not in a position to disclose that information yourself, for instance, when you arrive at an emergency department.
In principle, the idea is sound, but other implementations of a shared summary records around the world have not been very successful. The United Kingdom’s recent experience has shown little uptake by either consumers or health professionals.
The fact that PCEHR is optional, both for the suppliers of the information and the patients themselves means that relying on its use will be almost impossible.
Even if a patient has a PCEHR, it will be very difficult to say how complete and how up-to-date the information is. This is made even worse by the fact that a patient can hide parts of her record.
At the same time, there is little research evidence to show that shared summary records provide any significant benefit in patient health outcomes.
In the face of all this, it is fair to ask why Australia is trying to implement the PCEHR in a extremely ambitious timeframe, at a cost of $470 million dollars when budgets are tight and cuts are being made across the board.
PCEHR was another of Kevin Rudd’s bold plans that arose out of the National Health and Hospitals Reform Commission (NHHRC) Report in 2010, but it’s built on a fairly lengthy history of government-funded eHealth programs.
Like other things cherry-picked out of this report, the commission had recommended PCEHR as part of a comprehensive action plan on eHealth.
Obviously not everything in the report was, or could be, implemented.
The recommendations on eHealth could also be argued to have come from an agenda that promoted the self-interest of organisations such as NEHTA (the National E-Health Transition Authority), whose clinical lead, Dr Mukesh Haikerwal, was a member of the NHHRC.
Established by the previous Coalition government, NEHTA was asked to produce standards, infrastructure and operational details underpinning eHealth in all Australian health jurisdictions. This included PCEHR.
NEHTA are funded in this by the State and Federal Governments and have on their board the director generals of health from each of the participating states.
Apart from the conflict of interest created when project money is awarded to state health jurisdictions over and above other project applicants, it is clear that NEHTA benefits from the NHHRC making a strong claim for funding eHealth as part of national healthcare reform.
Fortunate then that NEHTA had a representative on the commission.
Where are we now with the PCEHR project?
The Federal Government is still aiming for July 2012 as the date when every Australian will be able to opt for their own PCEHR.
As eHealth blogger Dr David More recently put it, they have between Buckley’s and zero chance of meeting that date.
There are a number of reasons for this. Firstly, not everyone believes that they have been engaged as comprehensively as they might have wished.
Consumer and privacy groups, doctors, and in particular the Australian Medical Association (AMA), the medical software industry, academics and primary care organisations would like some input into PCEHR.
So far, NEHTA, the Department of Health and Ageing and the Minister for Health have all shown little enthusiasm for active engagement, preferring instead to interact with the so-called eHealth sites chosen to “test” and showcase technology that may, or may not, end up being part of the PCEHR proper.
The second issue: to say that not all of the technology plumbing or principles of operation have been worked out would be an understatement.
Even with the revised blueprint released by the Federal Government, there are still a large number of questions about how all of this will work in practice.
In particular, the question of who will take overall responsibility for the information regarding a particular patient on PCEHR has not been directly addressed.
Most people believe that the patient’s general practitioner should take overall responsibility for that patient’s health records. In fact, the GP will have to agree to release the patient’s information to the PCEHR in the first place.
But with ever-increasing time pressures on GPs, there isn’t a great deal of enthusiasm on their part to spend time validating and explaining the data on a PCEHR to the patient when there is barely time to do the same for the primary record held by the surgery.
For a large section of the population who only interact with their GP rarely, the PCEHR will be of very little value and would contain little useful information.
Even with PCEHR, most information exchanged between GPs, specialists, allied health professionals and others will still be in the form of letters and reports.
The difficulty with this is that keeping even a consistent list of current medications up-to-date would require a GP to manually update this every time a report or letter is received – something that she clearly does not have the time to do.
Perhaps the most fundamental problem with PCEHR as it is now envisioned is that it is only a very small part of the overall solution.
The challenge facing healthcare requires a fundamental shift in how we view preventative health measures, how health care is delivered to an increasing and increasingly ageing, overweight and chronically ill population.
That eHealth is part of the solution is not in doubt, but it needs fundamental changes in the health process. In particular, it needs to support individuals to take control of their own health.
As it stands, PCEHR will not be available by July 2012 as claimed by the Government.
Even if it were available, it would not improve our health outcomes, in much the same way that the education of our children has not been revolutionised by the construction of some extra classrooms and halls, and global warming has not been mitigated by the installation of pink batts in a few people’s homes.