Accessing your medical records
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Accessing Your Medical Records
This fact sheet is intended for people with intersex variations/innate variations of sex characteristics. It may also be helpful for family members. This resource is not a substitute for independent legal or professional advice.
An important thing to remember is medical records are usually kept for up to seven years after the last time you see your healthcare practitioner. Pediatric hospital records are kept until the patient turns 25, so it is important to make sure you get copies before any records are destroyed. If a healthcare provider destroys or transfers a patient’s health records, they must keep a record of this action in a special register. This register must be kept for seven years after the entry is made.
Even though records can be destroyed under certain conditions, a healthcare provider can keep health information if it is still needed for the reason it was originally collected or for another legal purpose. However, if the information is no longer needed, the provider must take reasonable steps to either destroy it or remove all personal details so it can no longer be linked to an individual (de-identify it).
If you live in Victoria, you have a right to access your medical records under the Victorian Freedom Of Information Act 1992, and Health Records Act 2001. You will want to submit a written request to your hospital or pediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the Victorian Health Complaints Commissioner..
If you are from New South Wales, you also have a right to access your medical records under the NSW Health Records and Information Privacy Act 2002. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the NSW Health Care Complaints Commission.
If you live in Queensland, you have a right to access your medical records under the Queensland Health Records Act 2002. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the QLD Office of the Health Ombudsman.
If you are from South Australia, you also have a right to access your medical records under the South Australian Health Records Act 2003. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the SA Health and Community Services Complaints Commissioner.
If you live in Western Australia, you have a right to access your medical records under the WA Health Records Act 1994. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the WA Health and Disability Services Complaints Office.
If you are from Tasmania, you also have a right to access your medical records under the Tasmanian Health Records Act 1997, you have a right to access these medical records. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the Tasmanian Health Complaints Commissioner.
If you live in the Australian Capital Territory, you have a right to access your medical records under the ACT Health Records Act 1991. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the ACT Health Services Commissioner.
If you are from the Northern Territory, you also have a right to access your medical records under the NT Health Records (Information) Act 2002. You will want to submit a written request to your hospital or paediatrician, as well as any other hospitals you’ve stayed at. If you need to escalate your request, you will need to follow up with the practice or hospital first, and then the NT Office of the Health and Community Services Complaints Commissioner.
What to do When Information is Missing
Doctors sometimes retire or might end up inaccessible to you in other ways. Medical records can be lost or destroyed. People can become estranged from their families, or people responsible for your care can pass away. There are many different reasons why information might not be immediately accessible to you. This is part of the reason why it’s good to have a plan, so that in the event you are missing information you can figure out what your next steps are.
If you don’t have a complete set of information to work from, it can take a fair bit of detective work to fill in the gaps. During this time, it will be important to have a GP you can trust who can help you access the services you need. Getting a diagnosis can be an important first step to understanding some of the things that may have happened to your body. Understanding what treatment pathways are accessible to your variation can match up to certain scars or traits you have now. From there you can start to build a healthcare plan with your doctor, who will put you in touch with any specialists you may need to help establish a baseline for your health.
This can be a drawn out and invasive process that may only be partially covered by Medicare or other health insurance. It can also put you in a medicalised framework where treatment and intervention are pushed as the preference. This is why it’s strongly preferred that you first exhaust other avenues of information first. It’s also important that you remain mindful of your rights in a healthcare setting, so that you know how to respond to potential discrimination and harassment.
You might also consider connecting with a peer worker or peer support organisation. Not only can they offer support while you’re dealing with difficult medical appointments but may be aware of other services and avenues that can assist you. You may also find a better understanding of your own circumstances by tapping into common experiences, and much more region-specific advice on what doctors to engage with and which to avoid.
Official Records and Channels
My Health Record
In 2012 the Australian Government Department of Health introduced the My Health Record system which has been operated by the Australian Digital Health Agency since 2016. My Health Record is an online, electronic database that stores all of your health information in one place. Its use and operations are governed by the 2012 My Health Records Act. My Health Record allows you and nominated healthcare professionals to access your medical history, test results and other medical files and is designed to provide flexibility and ease of use to you and your doctors.
Individuals were able to opt in or out of having a record created and kept and you are able to remove or delete individual files or your entire record at any point. You can also view the access history on your record to see when information and files were added to your record, or when files have been accessed, viewed or updated. Only you or your nominated and authorised representatives with full access can view the access history on your health record, so your healthcare providers will not be able to see this information.
If you have opted into My Health Record your medical information will be stored online and accessible through this, however old medical records prior to 2012, and/or prior to you opting in and creating a record will not be automatically brought across or added to your record.
If you have a regular GP they can prepare what is called a shared health summary that details your previous health information, diagnoses, medications, allergies and test results. This can then be added to your record. You can also add up to 2 years of information from Medicare such as any vaccinations or medications you have had in that time. For older medical records you will need to request this from your doctor directly. See the above information for state and territory variations to how this information is requested.
If you do not have a My Health Record you can choose to create one at any time. My Health Record can also be used throughout your life and can be a great way to maintain access to paediatric records for minors. My Health Record can be set up from pregnancy allowing parents to register a newborn. Newborn and early years records can store information such as growth charts, achievement and development records, health check and vaccination schedules, allergies and track any medications. Records for children under 14 are managed by authorised representatives such as a parent or guardian. Once a young person turns 14 the authorised representative is removed from that record and the young person is able to manage their own health record. This means that the previous authorised person will no longer be able to access or view the child’s record. An authorised or nominated representative can be added to the account if the young person wishes to. If a young person aged 14 or older does not have a My Health Record, they are able to independently create one once they turn 14. At this age a young person can also choose to cancel and delete their record all together or any specific information on it.
For more information about My Health Record and how to use it visit https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record
How to Access Your Medical Records
- Contact the healthcare provider or health service where you accessed care
To request access to your medical records the first step is to contact the healthcare provider or health service where you accessed care. Only you or your legal guardian can request this information. You will most likely need to provide some personal information such as your name and address, provide or show your government-issued photo ID, or complete a form to release your records to you.
- Provide the service with the relevant information they need to complete your request
When requesting your medical information you will need to provide information about what files you want access to. This can include naming specific files and records or listing the years or particular treatment you want the records for. You may also need to provide details about how you want these records to be provided, such as physical or digital copies, email or a filesharing option such as Dropbox.
- Pay any required fees and wait for your request to be processed
It can take up to 30 days for this information to be provided to you from the time of request and this may incur a small administrative fee to cover staff and material costs for preparing and providing the records. Fees may be waived if they cause financial hardship or are considered unreasonable.
Denial of a Request
There are a few cases where a healthcare provider will be unable to or may refuse to release your records to you. These limited circumstances include:
- If releasing the information would break any Territory or Commonwealth laws.
- If a court order prevents access.
- If the information relates to a Children and Young People Act complaint.
- If providing the records could pose a risk to your life or health.
- If the information was given in strict confidence.
Information for Retired or Deceased Healthcare Providers
If the healthcare provider who provided your care has retired or passed away the practice they operated from or an executor for their estate will retain their medical records. How long medical records are retained varies between different states and territories. In New South Wales, Victoria and the Australian Capital Territory health service providers are required to retain medical records for a period of 7 years since the rendering of the last service, while paediatric records are retained until the individual’s 25th birthday. You can check how long medical records are retained in your state or territory here.
What to do if I Still Cannot Access My Records?
The rights for accessing your health records are protected under each state’s Health Record Act and also under a National (Commonwealth) Law. These laws stipulate the rules about who can see your health information, your right to access it, and situations where access might be denied. The Freedom of Information (FOI) Act 2016 does not apply to private health records, so you must follow the process outlined in the Health Records Act.
If you do not receive your records within a reasonable time, contact the provider’s records department.
If your request is denied and you believe it was unfair, you can:
- Request an internal review from the health provider.
- Seek advice from a legal or consumer rights organization.
When to involve the Human Rights Commission:
- When you feel your request has been unfairly denied and the reason for denial seems unfair or incorrect or when the provider fails to give a clear reason for refusing access
- When there’s unreasonable delays and it is taking an excessive amount of time, they are ignored, or repeatedly delayed, or if you are unable to get updates and timeframe access.
- When fees are excessively high or a fee waiver due to financial hardship is denied
- When personal information is shared without your permission or incorrect details are recorded and not corrected.
- When a health provider is uncooperative or refuses to engage.
Alternative actions if the human rights commission cannot resolve your issue:
- Internal Review: Request a review directly from the health service provider.
- Legal Advice: Seek help from a legal aid service or an advocate.
- Ombudsman: If the issue involves government health services, the Ombudsman may be able to investigate.
Freedom of Information Requests
In most cases you will not need to worry about Freedom of Information requests. Freedom of information (FOI) relates to the 1982 Freedom of Information Act which is designed to give you access to information created or managed by the Commonwealth Government and government agencies. This may be relevant if you are trying to access a public health record or document that is managed by a government agency and is unavailable through other means. You can access these documents and records through an FOI request.
An FOI request must be made in writing and clearly state that the request is an application under the FOI Act. It must also clearly outline the document/s you wish to access and a reply address.
Finding Support
Intersex Support Organisations
interLink – www.ilink.net.au
InterAction for Health and Human Rights – https://interaction.org.au/ – Information and Advocacy
Intersex Peer Support Australia – https://isupport.org.au/ – Peer support
- +61 7 3017 1724
- info@ilink.net.au
- PO Box 1372 Eagle Farm QLD 4009
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InterLink acknowledges the Traditional Owners of the lands on which we work and pay our respects to Elders past, present, and emerging. We recognise that soverignty was never ceded and honour the continuation of Aboriginal and Torres Strait Islander connection to land, waters, and culture. We celebrate the rich diversity within our communities, extending our respect to all First Nations peoples.