Have you heard of My Health Record? If I were to trust my news feed on Facebook I would say that every person must have heard of My Health Record and is well informed on what it is, how it works and the change in policy to make My Health Record an opt-out system. However I know this isn't true, both because I am aware that what I see on social media is a simply reflection of my own interests (sometimes known as an 'echo-chamber') but also because I regularly see patients who have never heard of My Health Record. So let's talk about it and why it's so important that every Australian is both aware of My Health Record and understands its benefits and consequences.
This blog is a companion piece to my video, 'My Health Record', which presents a simplified version of this discussion.
What is My Health Record?
My Health Record is an initiative of the Australian government to have a centralised database of health records for every Australian. The idea is that whatever health information we choose (such as a summary of our health information, pathology reports, specialist reports, etc.) can be uploaded to a centralised database and then this system can be accessed by both our healthcare providers and ourselves.
My Health Record is not a new initiative, it has been around for several years. My Health Record had a very slow uptake amongst patients and healthcare workers for several reasons. Firstly, the technology is not hugely sophisticated; often it involves simply generating and uploading a 'health summary', a PDF document that contains information about a patients health. While this has some merit, healthcare workers found it very limiting; even with authority it was unable to be edited, like a working document, and therefore a new summary had to be uploaded over and over again. What this means is that My Health Record can't be relied upon as a clinical record, you must take all the information with a grain of salt. For both patients and healthcare workers it also meant more steps, even if it was just a few clicks, and this was a disincentive. As it stands today about 4-5 million Australians have a My Health Record; some people have one but are not even aware of it (which is a big concern).
The reason My Health Record is getting so much attention now is because it is moving from an opt-in system, where you could choose to have a record created, to an opt-out system, where every Australian will have a record created for them if they don't opt-out during the 3 month opt-out period (16th July - 15th October 2018). If you do opt-out, you can have a record created at a later date, however if you do already have a record you can't delete this but you can cancel it (however the data will remain present if you choose to reinstate this at a later date).
There is a case for My Health Record, and there is a case against My Health Record. Many Australian publications and officials have added their two cents to this debate; I want to try to present an overview of all those arguments so that you can decide for yourself!
Benefits of My Health Record - streamline, emergencies, continuity.
As an idea, My Health Record is an excellent one. The theory of having one access point for all our health information means better care and could potentially save lives. My Health Record allows for easier, faster sharing of patient information between a clinical team, like GPs and specialists. If you're seeing a GP it's annoying and time consuming having to track down specialist and pathology reports. If your GP can't find these or hasn't received them then it can mean doubling up on tests and being delivered incorrect treatment plans. My Health Record would streamline that, improving care and importantly reducing the cost on the healthcare system.
My Health Record would be vital in an emergency. A surprisingly large issue in emergency's are medication errors, either due to drug-drug interactions or allergies. To be able to know a person’s allergies and current medications could avoid potentially fatal treatment errors in the field.
My Health Record also creates better continuity of care when someone visits a different GP, practice or hospital, and this is really important for anyone with a chronic or complex illness. If someone with a chronic illness needs to attend another practice it can be very difficult to obtain a script or pathology request. How is that GP supposed to know your medical history and justify providing you with potentially harmful medication? My Health Record would bridge this gap and allow both patient and doctor confidence that the correct treatment decision was being made.
Consequence of My Health Record - privacy, data, stigma.
One of the main concerns of My Health Record is privacy. Having all our health information stored in one centralised system is a scary concept when you consider the prospect of people hacking this system and stealing, manipulating or abusing this information. The Australian government is assuring Australians that My Health Record is hack-proof and they have top-level security. While I don't doubt that the level of security is phenomenal, nothing is hack-proof (especially in a rapidly advancing digital world). In fact, despite contrary reports from the government, My Health Record has been breached before. While the government is attempting to shift its position on what exactly a breach means, the concern is present and real.
The second concern is around the use of our data (data = our health information!). The data that lives on My Health Record will be stored by the government until 30 years after we die (or, if our date of death is unknown, 130 years after our date of birth). There is concern about who the government will be able to pass this data to. For example police can access our data if the Australian Digital Health Agency (ADHA), who controls My Health Record, 'reasonably believes' it would be useful to an investigation... but what does that very vague sentiment mean, exactly? Furthermore our data can be passed on in a de-identified way to secondary parties for 'research' purposes, as long as the motive is not solely commercial. Again, this is a very vague sentiment. I should note that a user does have the option to tick a box online to not have secondary information passed on (however once again this is an opt-out step). As it stands currently Health Insurance companies will not have access to our data, which is a positive thing I would like to see remain constant. After the recent Facebook / Cambridge-Analytica scandal we are all too aware that our data can used against us to create targeted advertising, manipulate what we see online, affect democratic processes and more; we should be worried about this.
Another very important issue to consider is stigma. My Health Record will contain sensitive health information that could be used to discriminate against certain people, for example a person living with HIV, people with diverse genders or sexualities, sex workers, people who have mental health issues, people who have previous history of drug or alcohol use, and more. These groups already experience greater levels of discrimination when trying to access care and having a My Health Record could compound this even further. All healthcare workers are bound by law to treat all patients equally but I can tell you that this doesn't happen; I have witnessed stigma and discrimination against patients, both in hospital and in the community. Those who fall outside the socially constructed 'norm' of the ideal patient could suffer as a result of My Health Record. As someone who works with a lot of these communities, this issue deeply concerns me.
It is interesting to note that a lot of these issues would not actually be issues if the system remained opt-in, a sentiment that has even been echoed by members of the Liberal government and the Labor party. On this note I will say that while I see the merit in a centralised database of health records I am currently against My Health Record being an opt-out system. If better education were provided to the general public, but more importantly to healthcare workers, then I think the uptake would happen naturally. If the public don't trust the government and/or My Health Record due to this push then My Health Record won't achieve all its potentially amazing benefits.
What should you do?
If you came to this blog to be told what to do, sadly that won't happen. I am not going to tell you whether to opt-out or have a record created; that is a personal decision. Firstly you need to examine your own healthcare needs because we are all individual and some people will get more benefit from this system than others, just like some are more at risk. You should continue to do research - look at all the amazing links I've provided throughout this blog! Finally you should chat to your GP, your Primary Health Care Nurse and the people in your lives. You have until October 15th to decide, so make sure that your decision is an informed one!
I am definitely not the only person to present an overview of the My Health Record debate! Both ABC and Choice have produced excellent summaries / FAQ pieces on this topic, full of links to expert opinions, and I encourage you to read them as well!).
Thanks for reading, and remember that, 'There is no Healthcare without Self-care."
**UPDATE August 1st 2018** Since the publishing of this article, changes have been made to My Health Record policies around police and government agencies accessing records, as well as the ability to delete records. Learn more here.