By Dr Annette Carruthers, General Practitioner and President, MS Australia Board of Directors.
In 2018, every Australian will get a My Health Record unless they opt out. If you don’t want a My Health Record you have until 15 November to visit the MHR web-site to follow the ‘opt out’ process.
Before making the decision whether to opt out or not, it is worth finding out more about how My Health Record may help you, your doctors and other healthcare professionals make better healthcare decisions.
Many people were taken by surprise by the recent announcement by the Federal Health Minister, of the opt out period for the My Health Record even though as part of the 2017-18 Budget, the Australian Government announced that the My Health Record system would transition to opt-out participation.
There is, in fact, a long history that has brought us to this point. Since at least the 1990’s an enormous amount of effort has gone into developing a secure electronic health record system for Australians. In fact, an opt-in personally controlled electronic health record has been available since 2012. Almost 6 million people have signed up for the record since then, mostly by invitation from their general practitioner. What has become clear is that to realise the benefits of the electronic health record it needs to become more universal, and through regular use, a routine part of health care.
The dream has been to create an online summary of your health information. For consumers it is an opportunity to have your key information in one place and to have access to information about your own healthcare. This is important for people with MS who will be seeing multiple health care providers, and particularly when moving to another region or specialist. There is enormous value in knowing about your MS diagnosis, any previous treatments and what medications have been prescribed.
For clinicians it can save lives in emergencies and help doctors find information quickly and make safer health care decisions. We know that 230,000 hospital admissions per year are due to medical misadventure and that much of this is preventable with access to the right information. 17% of pathology and radiology tests are currently duplicated, often because the previous results are not readily available, an extraordinary waste of community resources.
It is not generally understood that after the opt-out period concludes in November a record for each person will be created. Each person then has to activate their record, by doing it themselves online, giving permission for the GP to download a health summary, or allowing a discharge summary to be uploaded if there is a visit to hospital.
It is entirely appropriate to have a discussion with your GP about what information should be uploaded that would be relevant to your future healthcare. At the time of activation, two years of data on MBS item numbers and providers and dispensing of Pharmaceutical Benefits Medicines will download. Your previous medical records from any source are NOT downloaded or accessible excepting the GP Health Summary. Going forward, updated health summaries, event summaries, specialist letters, hospital discharge summaries, pathology and radiology results and prescribed medication information will be added. A consumer can create their own health summary in addition to the GP summary. Other really useful information will be your immunisation history from the Australian Immunisation Register. An Advance Care Planning document can be created by the consumer and uploaded and information from the Organ Donor Register will also be available.
My Health Record is personally controlled. It is important to know that consumers have record access control and can control which healthcare organisations are able to see their record or which organisations can see specific documents.
There is a “break glass” facility available in life threatening situations to allow emergency doctors to see vital information, however, all instances of this are audited and people can choose to receive a text or email to let them know in the event that this occurs. Consumers can also see a complete audit history of access to their record in real time and set up notifications for when their record is accessed.
You can remove clinical and Medicare documents in your My Health Record. This means that healthcare providers won’t be able to access these clinical documents, even in an emergency. It is best not to delete any information that is important for your healthcare.
One major concern that has been receiving publicity lately is the Section 70 provision in the legislation which enables the Australian Digital Health Agency to release information to agencies such as the police or Home Affairs in certain serious situations without a warrant. This has never occurred to date but was of such concern to organisations such as the Australian Medical Association and the Royal Australian College of General Practitioners that they have appropriately lobbied for this to be changed.
Trust is a vital component of the relationship between you and your doctor and confidentiality is an important part of that trust. Information from the My Health Record can be subpoenaed just as your doctor records currently can be. Access by insurance companies to your medical records can only happen with your signed consent and this is unchanged. In general, there will be much less information on your My Health Record than is held by your GP.
Concerns have been expressed about the security of the information and control over who has access to the system. The system has not been breached within its current six years of operation and undergoes constant surveillance and threat testing. In general, the security is much higher than that of your local GP or specialist, where your information will continue to be held.
As information accumulates over time, people with MS will be more informed about their test results and better able to monitor their response to various treatments. The record will be invaluable when seeking second opinions. The potential advantages of My Health Record for people with MS, their families and carers, greatly outweigh the risks.
If you remain concerned about the My Health Record system, you may wish to discuss your concerns with your GP or other health professionals in your medical team.
If you are seeking more information about the My Health Record system, including information regarding the opt out process, and how your privacy and security is managed, please visit: https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record.