A first look inside the PCEHR
First, how to register online. As we reported last week, the call centre for telephone registration was constantly busy, so we waited until Saturday to register online, even though there was no official announcement that this was possible.
A hint to those thinking of signing up online: it helps very much to have previously registered with australia.gov.au, which acts as a single sign-on system for a range of government departments, including Medicare Online, Centrelink and the national eHealth records system.
It also helps to have registered with Medicare Online as your identity is then much easier to verify. Pulse+IT understands that those who have not linked to Medicare Online are finding it difficult to continue with online PCEHR registration and are being asked a series of questions involving the individual's last visit to a doctor, or are being told to call the 1800 number.
Last weekend, we first tried to apply for a PCEHR through the official PCEHR site at ehealth.gov.au. This takes you to australia.gov.au, where you must either register or log in. Registering for australia.gov.au requires you to write a series of security questions, one of which pops up every time you log in.
Once that is done, you can click on the link to the eHealth records system, which will take you back to ehealth.gov.au to set up your PCEHR.
Unfortunately for us, we had not linked to Medicare Online through australia.gov.au, so the system told us it did not enough information to verify our identity and we should try the helpline. Not willing to give up, we added the link to Medicare Online at australia.gov.au, waited a day and then tried again.
Success. The system had enough information on us so we were able to set up our PCEHR on Sunday. (The many steps consumers have to go through to register online may be one reason why it has not been officially announced that online registration is available.)
On first view, the PCEHR is exactly what is described on the tin – it is personally controlled. While healthcare professionals will at some stage be able to upload a shared health summary and clinical documents, it is the consumer who controls what goes in and what other people can see.
A slight criticism is that on the individual PCEHR home page, quite a lot of space at the top of the screen is taken up with logos: the Department of Health and Ageing, eHealth, the National eHealth Record System and National Health Reform logos all make an appearance, meaning you have to scroll down to view your record in its entirety. This might prove annoying to those who are unfamiliar with web pages, such as the elderly, one of the government's prime targets for the PCEHR.
When you first enter your record's site, it gives you a 'Health Record Overview', also known as the consolidated view. This is not functional at present, but according to Andrew Howard, head of the PCEHR at the National E-Health Transition Authority (NEHTA), specifications for a revised consolidated view will be released in August, along with a range of new functions that consumers should be able to see in their PCEHR.
The Health Record Overview will present shared health summaries along with information from other clinical documents received since it was created.
The PCEHR also includes a Medicare Information view, which is not functional as yet but which will integrate information such as PBS and MBS history and Australian Organ Donor Register and Australian Childhood Immunisation Register status. Mr Howard told a software vendors' meeting on June 27 that this information should be available in August, following final testing of the PCEHR's Medicare interface with Medicare Australia.
It also appears there will be a section allowing you to see “Recent documents sent to the PCEHR in the last 12 months”, but again this is not yet functional and will presumably only go live when clinical software has been rolled out to GPs. This is likely to begin next month or in September, with final testing currently being done through the lead sites.
On the left-hand side of the screen as you view your PCEHR is a menu divided into four sections:
- Clinical Documents
- Medicare Records
- Restricted Settings
Clinical Documents will contain the promised shared health summary, which will be compiled by your healthcare provider and uploaded. There is no word as yet on when this will be available, although under the PCEHR's Concept of Operations, it will be a ‘point in time’ clinical summary of your healthcare status.
Under the Personal heading, a drop-down menu lists:
- Personal Health Notes
- Personal Health Summary
- Advance Care Directive Custodian
- Your Personal Details
- Emergency Contact Details
If you click on Personal Health Notes, you are invited to add a new note. The notes look a little like the comments section of a news website, with a title and description, although you are not limited in the amount of words you want to write. This is the promised personal diary section and it is up to the consumer whether they use it or not. One would imagine that new mothers and hypochondriacs will use this section the most.
We added two trial personal health notes (both bemoaning current weight status and BMI) and they were subsequently listed under the Personal Health Notes section in the menu by date and title. There is a delete button available, and when you click on the note a little pop-up appears telling you when the note was written and by whom. Healthcare practitioners do not have access to this section of the PCEHR.
Then there is the Personal Health Summary, which lists your allergies or adverse events, along with your current medications. Users are asked to list allergies or adverse reactions by substance/agent and reactions. For current medications, you are asked to list them by medication, dose information, reason for taking medication, and additional comments.
This section of the PCEHR will prove very useful in emergencies, and also for the chronically ill or elderly who take several medications and have trouble keeping track of them. Healthcare practitioners do have access to this section of your PCEHR. What is missing perhaps is the ability to say you have no allergies or medications, as otherwise it could look like this section has not been completed correctly.
Next is your Advance Care Directive. This allows you to enter the name, address and contact details of the custodian of your Advance Care Directive, should you have one.
Your Personal Details lists your name, IHI number, date of birth, age, sex and address, although the last element cannot yet be displayed. This information has been linked through Medicare Online, so if you want to change anything in here, you have to contact the Department of Human Services.
Then there is Emergency Contact Details, which allows you to add several different contacts including next of kin and carer. As it should be, this is a very easy to read section of the record.
Next is Medicare Records, which will provide a Medicare services overview, but this is not yet ready. (Medicare Online only lists events from the last 12 months – if you want information on events before that, you have to contact Medicare.) Mr Howard indicated at the vendors' meeting that this would not be ready until the end of the year.
Now comes the interesting part of the PCEHR as it stands. Much of the debate over the design of the PCEHR from consumer and privacy groups centred around who has access to what on your record. The last heading in the main menu is Restricted Settings, which lists:
- Medicare Information Preference, which allows you to choose whether or not your PBS, MBS, organ donation and childhood immunisation register information is available to be seen by others
- Notification Settings, which allows you to be notified by email or SMS if your PCEHR has been accessed
- Manage Access to this Record, which allows you to list your authorised or nominated representatives if you have them; and
- Manage Document Access, which allows you to nominate certain documents that you do not want other people to see.
The PCEHR has been designed with general access as the default, but if you do have a document you don't want someone to see, you can block them from doing so. As the site explains: “You can manage the level of access healthcare organisations have to your documents below by selecting the access level from the drop down menu on each document. You can effectively remove a document from view by clicking on the “Remove” button. Removing a document will result in it being hidden from your healthcare professionals.”
In other words, the document has been removed from everyone else's view, but is still contained within the PCEHR and the consumer can still look at it. To delete a record permanently from your PCEHR, you must contact the System Operator, which for the next two years will be DoHA.
If you do want to restrict access to your record, or to specify that one healthcare organisation or provider can access it but another can't, you must create a Record Access Code (RAC). You then give this code to the organisation or professional to whom you do want to provide access.
The site does specify that even if you have a record access code, all information in your record will be available in a medical emergency. “To gain emergency access a healthcare professional must declare that there is a serious threat to your life, health or safety,” it says.
Finally, the PCEHR has an Audit Log, which contains the details of all the activity on your record. The log includes approval date/time, operation performed, organisation name, role, access condition, action type, subject type and subject.
In summary, the PCEHR is a utilitarian but reasonably intuitive record and will make much more sense once it becomes populated with useful information. It has not been designed with the bells and whistles of other online health records, such as those offered by Microsoft through HealthVault or some private health insurers.
Apart from the difficulties experienced in registering online, once you have and your PCEHR has been created, it is a reasonably easy system to navigate for those used to entering and maintaining information online. For those unfamiliar with the internet, it would be useful to have a family member or carer present to assist.
Posted in Australian eHealth