Table of Contents
Answers to questions you didn’t even realise should be asked.
The My Health Record is being sold to Australians as a personal aid to be used by individuals in managing their healthcare. The reality is that it contains far more information than is appropriate for a concerned and engaged individual who is interested in improving their health and healthcare experiences. That large amount of unnecessay information has value to the government, research organisations, law enforcement bodies and revenue collection agencies. This is explained here.
The potential uses of the My Health Record system and the data that is accessible through it, do not seem to align with the messages being used to promote the system to the general public via website such as www.myhealthrecord.gov.au
The patient requires a brief, targeted, up-to-date summary of their health status and future desires should they be in difficult or life threatening situations. Some components of the My Health Record might deliver these things, but there are cheaper, more effective ways of delivering these at much lower risks to patient privacy and safety.
For a more complete discussion regarding the value of My Health Record see here.
This and other pages on this site explain why these things appear to us to be obvious and true. But we have spent a lot of time examining and analysing the information about the system that the government has made generally available.
Wherever possible we have provided links to source information that you can check if you wish.
Paragraphs in blue are intended to indicate quotes.
Health Records were originally kept by medical practitioners as reminders to themselves as to their patient’s condition, their symptoms if unwell, treatment and medication that had been prescribed and notes to themselves about the patient.
These health records have changed little over time although many have been converted to electronic systems.
A OECD benchmark report defines two types of health record
Provider-centric electronic records:
Often referred to as electronic medical records (EMRs), electronic health records (EHRs), or electronic patient records (EPRs), provider-centric electronic records include systems that are used by healthcare professionals to store and manage patient health information and data, and include functionalities that directly support the care delivery process.
Patient-centric electronic records:
Often referred to as personal health records (PHRs), patient portals, and other patient-centric electronic records, these systems are typically used by patients and their families to access and manage their health information and organize their healthcare.
The UK has developed a Summary Care Record, which is a type of PHR, some details and a comparison with My Health Record are available here. It would appear to be a much better solution than My Health record.
The opening statement on the home page of the government’s website says.
“My Health Record is a secure online summary of your health information. You can control what goes into it, and who is allowed to access it. You can choose to share your health information with your doctors, hospitals and other healthcare providers.”
The list of half truths in this statement are staggering. The realities are:
- If you don’t fully participate and sign up to myGov, you can’t even access the system,
- If you don’t appoint a nominated healthcare provider you won’t get a summary,
- It is only a summary, if you and your nominated health care provider make it so. It doesn’t happen by magic,
- In fact there can be many health summaries in the record. Lots of summaries do not make a summary,
- You cannot control what your doctor actually puts in the summaries, they can put things in without telling you or asking your opinion,
- You don’t have a lot of control over access
My Health Record
The government’s web site also says this:
What will happen to already existing medical records?
“My Health Record will not replace existing medical records. It is an additional tool that brings together a summary of an individual’s significant health information that is important to their ongoing care.
Healthcare providers will continue to take and review clinical notes. It is important to remember that the My Health Record system is not intended to be a communication tool – it will not replace the need to communicate important health information directly to individuals or other healthcare providers treating them.”
Healthcare Providers FAQs
How about reliability and completeness?
“Clinical information you find within your patient’s My Health Record should be interpreted in much the same way as other sources of health information. It is safest to assume the information in a patient’s My Health Record is not a complete record of a patient’s clinical history, so information should be verified from other sources and ideally, with the patient.”
Healthcare Providers FAQs
The part about the record not being complete is very important. Patents can decide to not have certain data loaded, they can delete or hide documents, they can prevent certain organisations from seeing either the whole record or certain documents and the various summary documents may not be up-to-date.
Legislation (The My Health Record was previously known as the Personally Controlled Electronic Health Record)
The Personally Controlled Electronic Health Records Act 2012 says:
3 Object of Act
The object of this Act is to enable the establishment and operation of a voluntary national system for the provision of access to health information relating to consumers of healthcare, to:
a. help overcome the fragmentation of health information; and
b. improve the availability and quality of health information; and
c. reduce the occurrence of adverse medical events and the duplication of treatment; and
d. improve the coordination and quality of healthcare provided to consumers by different healthcare providers.
4 Simplified outline of this Act
The My Health Record system is a system for making health information about a healthcare recipient available for the purposes of providing healthcare to the recipient.
There is more to section 4 but not relevant to the purposes of the system
Current Health Record Legislation
The legislation allows healthcare providers to access a patient’s My Health Record for “the purposes of providing healthcare to the recipient” and it imposes certain limits to access but it does not define usage.
It does not specifically define the category of health record into which the My Health Record falls. i.e. it does not specifically state if it is a eMR or a PHR.
There are two types of documents in, or accessible via, the My Health Record System
These are usually entered manually either by the patient’s nominated healthcare provider or by the patient.
- Shared Health Summary (one and only one, uploaded by the patient’s nominated healthcare provider, who does not have to ask the patient’s permission or opinion) Access to this document cannot be controlledIt is important to know that this data is not automatically created and updated. If the nominated healthcare provider does not know about something, they will not be able to put it in the Shared Health Summary. If something happens or changes, if the patient does not tell their nominated healthcare provider and get them to upload a new Shared Health Summary it, that information will not reach your SHS.A Shared Health Summary can contain:
- Personally identifying information and contact details
- Allergy information
- Immunization information
- Prescribed medicines
- Medical history
- Event Summaries (uploaded by the Nominated Provider, who does not have to ask patient’s permission or opinion.)
- Personal Health Summary ( a document the patient creates and uploads)
- Patient Notes (created and uploaded by the patient to which access is permanently denied to health care professionals)
- Advanced Care Planning document
These are either in, or are sourced from other systems. From the government’s descriptions of the system it is not clear where these documents are stored, however from an operational point of view their locations are irrelevant.
Clinical Documents can include:
- Medicines prescribed by the patient’s doctor. It does not indicate if the patient is taking medications prescribed by another doctor, by a hospital or if the patient is not taking medication that has been prescribed.
- The patient’s Medicare claims history. This can reveal visits to healthcare professionals and/or institutions that may suggest certain problems, issues or medical activity that the patient would rather not be made public. The government advises that this may be a privacy issue for patients.
- Organ donation decisions
- Hospital discharge information. These are automatically created and uploaded to a patient’s My Health Record
- Diagnostic imaging report (like ultrasound or x-ray results) These may be automatically created and uploaded to a patient’s My Health Record as well as sent to your GP.
- Pathology reports (like blood tests) These may be automatically created and uploaded to a patient’s My Health Record as well as sent to the patient’s GP.
Managing Your My Health Record
With comments added for clarification.
Definition of Nominated Healthcare provider
Your nominated healthcare provider is decided by mutual agreement and has the role of developing and managing your Shared Health Summary. To be a nominated provider, the person must be a medical practitioner, registered nurse, or an Aboriginal and/or Torres Strait Islander health practitioner with a certificate IV in Aboriginal and/or Torres Strait Islander Primary Health Care (Practice). A nominated healthcare provider is not required for you to have a My Health Record.
Managing Your My Health Record
Note that you do not need a nominated healthcare provider to have a my health record, but you do need one if you wish to have a Shared Health Summary.
The government’s claim that “Your My Health Record contains a summary of your health information.” can sometimes be true but is also misleading.
A Shared Health Summary only contains summary information if you have a nominated healthcare provider and you and your nominated healthcare provider arrange to put it there and maintain it.
It also contains a lot of other detailed clinical and other data. If you accept the default controls and upload options, there could be huge amounts of information about you and your health and healthcare activities.
Some GPs and patients are uploading Shared Health Summaries and patients are creating Personal Health Summaries.
The government is releasing statistics on the system. It should be noted that identifying actual usage is not easy. The Number of Shared Health Summaries seems to be the total number uploaded since July 2012, not the number of people who have a SHS. This is because SHSs cannot be edited, therefore any updates count as new uploads. The number of people with a Shared Health Summary is almost certainly less than 1% of the population (this assumes on average eachShared Health Summary has been updated once)
Discharge summaries are being uploaded and these are mostly done automatically via a system that each state runs.
In fact, this use of the My Health record, to transfer clinical documents from hospitals to GPs, appears to be the most frequent and useful function of the system. It does raise a couple of questions:
- Why is a personal health record system mainly being used to achieve clinical document transfers?
- Why was an infrastructure that does just that, and nothing else not developed.
Transferring clinical documents between health providers has been a problem in healthcare for many years. Some states have solved this problem (e.g. NSW*) but it can still be a problem between states.
A specific and focused solution, that did not store these documents in a privacy risky and invasive manner, would probably have been a better approach.
HealtheNet for GPs. June 2015
Everything the government says about the My Health Record and the obvious nature of the system leads to the conclusion that the My Health Record system cannot possibly be a Provider-centric electronic record.
There may be information in a My Health Record that is relevant to particular health care providers when delivering service to a patient. The obvious two occasions as are when a service provider has never seen the patient before and in emergency situations.
Under normal and in the most frequent circumstances, a healthcare provider would have no use for My Health Record. A GP, specialist or hospital will have their own EMR. A pathology or diagnostic imaging organisation needs very little patient data and that can be delivered, as is done now, via referrals.
If this is true, then there are likely to be very few, if any, significant benefits to the health sector in terms or reduced costs or increased effectiveness.
The My Health Record system can only be of use to patients and only then under certain circumstances and in specific situations.
Furthermore, the only parts of the My Health Record system that are of use to a patient are the Shared Health Summary (assuming they are kept up-to-date and are complete), Event Summaries and Personal Health Summaries. All the clinical documents and other detailed, specialist medical information are probably useless at best and open to misinterpretation at worst.
They are also a quite unnecessary risk to patient privacy.
There are a number of important questions that can be leveled at the Government.
- The My Health Record System is only a Patient Health Record, why does it have so much unnecessary clinical data in it?
- Why is a Patient Health Record system being used for document transfers, a function that has nothing to do with patient’s needs?
- Why is the Government so keen to make the My Health Record system opt-out? Patients should decide if they want or need a Patient Health Record.
- Why is the Federal Government operating a health record system of any type when it is the states that deliver most health services?
- What does the government intend doing with the personal health data it can acquire through the My Health Record?
- Specifically, is it intended, or even just possible, that My Health Record data can be liked to 2016 census data?
It would be very helpful if the Federal government demonstrated transparency and openness regarding Australian’s health data, preferably before making it opt-out and most definitely before making it compulsory.