Search Results for: health information

Digital Health

There is so much going on in the digital health space. It is a complex area and difficult to know what issues need to focus on. People are rightly concerned about their data and its privacy. But being able to share your health information quickly could mean the difference between life and death. Queensland Health developed a Consumer Charter on Digital Health which aims to reflect consumer priorities and needs in relation to digital health.

In WA the Digital Health Strategy 2020-2030 was released, and a key initial deliverable will be creating a statewide electronic medical record in our hospitals. This may seem confusing, given that the My Health Record was implemented nationwide in 2019. As at December 2019, 22.68 million Australians had a My Health Record, with 2.4 million of those in WA. (See here) A key thing to remember is that:

  • An electronic health record is designed to have a more overall view of someone’s health, across hospitals, GPs, pharmacists etc.
  • A medical health record tracks medical care usually within one hospital.

We are currently working with the WA Department of Health to develop a Consumer Charter which focuses on digital health. HCC are convening 10 Kitchen Table Discussions on the topic and is currently seeking Discussion Hosts. The Kitchen Table Discussion comments will be used to form a Consumer Charter – this will include non-negotiable principles to guide future direction.

My Health Record Resources

In 2019, the Australian Digital Health Agency released a number of new resources, and we partnered with them to share them on our website and through social media. We also undertook a Consumer Survey – you can find the full report of our work here.

If you are using My Health Record, we recommenced you log in to take a look at your information and update your privacy settings. These brochures provide further information on how to use your My Health Record now that it has been set up.

How can I find out more?

Check out these Frequently Asked Questions

What is My Health Record?

My Health Record is an online storage and management system for each individual’s health information, such as prescriptions, vaccinations, allergies, and results of pathology tests. My Health Record only contains a summary of your health information, not a detailed record like your GP would keep. My Health Record is administered by the Australian Digital Health Agency (ADHA).

My Health Record does not replace records currently held by your health providers, such as your GP or hospital; it is an additional collection of health summaries. You control what appears in your My Health Record, and who can see the information contained in it.

Summary information flows into an individual’s My Health Record from Medicare, GPs, public and private hospitals, specialists, pathology, diagnostic imaging, allied health, and aged care. If you have a My Health Record created, the last 2 years of information from your Medicare record will be added to your My Health Record. No past information from other sources will be added. For example, any hospital visits you have had prior to your My Health Record being created will not appear.

Many people already have a My Health Record already as it’s been available for several years. It was previously known as a Personally Controlled Electronic Health Record (PCEHR) or eHealth record. However, now all Australians will have a My Health Record made for them automatically unless they opt out by 31 January 2019.

You can read more here

Do I already have a My Health Record?

All Australians now have a My Health Record, unless they chose to opt out before 31 January 2019 or have since deleted their My Health Record.

You can find out how to access your My Health Record here.

How can I be sure information about My Health Record I'm reading is reliable?

When assessing any information about health, some of the key questions to ask yourself are:

WHO WROTE THIS?

Reliable sources of information include government publications, peak bodies, and government-endorsed sites. If it is not clear who is running or funding the site you are looking at, visit the About Us or Contact Us pages to find out. If you still don’t find an answer there, consider looking for another site altogether. A reliable source of information will be transparent about their who they are and their sources of funding.

WHAT IS THE EVIDENCE FOR WHAT THEY ARE SAYING?

Information is likely to be trustworthy if is based on reputable research or official documents you can refer to. Testimonials or opinion are not reliable sources of health information.

IS IT AN OBJECTIVE VIEW?

Does the information seem balanced? If the site is published by a private company or special interest group, consider also seeking out another point of view to see if there are other ways to think about the issue.

IS IT UP TO DATE?

Some of the information about My Health Record has changed rapidly. Make sure the information you read to inform your decision has been published recently.

Read this Health Direct information sheet about health information or this one from the Children's Hospital, Westmead

Is there a list of terms and definitions to help me work out what it's all about?

See this glossary of terms from the Australian Digital Health Agency website

What about privacy?

If you have concerns about the security of your information, increasing the security restrictions on your account may be enough to satisfy you. The security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when. See here for more information about how to set privacy and security controls.

See here for the My Health Record Privacy Policy

Can I set controls on my own My Health Record?

Yes you can. You can set a PIN on your whole My Health Record so that your health provider has to have you in the room before they can access it. You can also lock down individual documents.

My Health Record's security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when.

See here for more information or check this Privacy Fact Sheet from the Office of the Australian Information Commissioner.

Can I see who has viewed my record?

Yes you can, although it is usually at the health service level, it won't give you the name of the individual health professional who has viewed your record. Have a look here to find out more.

What about young people?

As a protection for the privacy of young people, parents are currently not able to access the Medicare information of a child over the age of 14. However, a parent is able to access their child’s My Health Record until the child turns 18 unless the child chooses to take control of their own record. Young people can take control of their own record from the age of 14.

Follow the links below for some further information that young people and their carers may wish to read.

The Conversation - Freezing Out the Folks

You Can Take Control of Your My Health Record from 14 Years of Age

What about family and domestic violence?

People vulnerable to domestic and family violence, who wish to keep their location details secure, may need to consider whether having a My Health Record presents a risk to them. You may choose to use My Health Record anonymously, or using a fake name (known as a pseudonym)

See this brochure here from the Australian Digital Health Agency on their webpage

See also this resource form the Women's Legal Service Queensland - Women and My Health Record

What if I'm worried about stigma? I have a sensitive health issue

If you have a health issue or life circumstance that you consider sensitive, you may wish to investigate the potential implications of sharing your health information via My Health Record. The risk of stigma and discrimination by health care workers may be a worry for some people, such as those carrying a blood borne virus, or those who have been affected by the justice system. The potential of a data breach that exposes personal information is also a serious concern for some people.

Sensitive issues or circumstances may include:

  • sexual health
  • mental health
  • degenerative disease
  • health care worker
  • drug use
  • criminal record
  • blood borne virus
  • sex worker
  • lesbian, gay, bisexual, transgender, or intersex
  • pregnancy, or termination of pregnancy

If you are in any doubt, you may want to consider opting out, or setting higher privacy controls such as a PIN for the whole Record

Can I use a fake name to protect myself?

Yes you can. The technical term for a fake name is a pseudonym. You can use a pseudonym for privacy reasons, for example you can use a different name for you or your children when you get healthcare.

To do this, you need to apply for a pseudonym Individual Healthcare Identifier (IHI) through the Department of Human Services (DHS). You can then use this name to register for a My Health Record.

Your pseudonym IHI isn’t linked to your Medicare information, so this information will not be available in your record.

You will not be identifiable or traceable through your pseudonym.

You can choose to have a My Health Record using your real name as well as a fake name (known as a pseudonym), and you have the option to merge these two records at any time.

To apply for a pseudonym IHI, you can call DHS on 1300 361 457.

What if I don't speak English, or am not confident with language?

Languages other than English can be accessed here

The My Health Record website contains a number of plain text and easy to read fact sheets for people who have difficulty reading and understanding written information. Some of these fact sheets are specifically designed for Aboriginal and Torres Strait Islanders. Interpreting assistance in languages other than English is available by calling 131 450.

Many sections of the My Health Record website contain videos which explain the information on the page.

See the Accessible Information page on the Australian Digital Health Agency page

What if I don't have internet access or am not internet savvy?

Each individual is responsible for setting the level of security on their Record, and ensuring that information on your Record is accurate and up to date. This information includes your contact details, and ensuring that you agree with the contents of information uploaded by others. Anyone who is not able to do this may wish to consider whether this is a risk to them. However, if you don’t have internet access, you can call the My Health Record helpline on 1800 723 471 to access your information. Helpline staff can tell you which documents are in your My Health Record but not what each document contains.

Who will benefit most from My Health Record?

My Health Record will give your healthcare provider a clear and complete record of your tests, medicines, and treatments, without you having to record this yourself, or communicate it to your provider. This could be particularly helpful to people who:

  • Are elderly
  • Have communication difficulties
  • Have English as a second language
  • Have cognitive or memory difficulties
  • Have severe allergies or other conditions
  • Take multiple medications
  • Have complex health conditions
  • See multiple healthcare providers
  • Live in a rural or remote area

A central record of your medical history means that you do not need to be responsible for remembering all of your health information, and your history is available to health professionals in a medical emergency.

Should I opt out or opt in??

Take the time to read about the factors that matter to you so that your decision is well informed.

  • Are you clear about the risks and benefits of each option? If not, do you know where to find more information?
  • Are you clear about the aspects of the decision that affect you personally?
  • Do you need advice and support to make this decision? If not, what reliable sources of advice and support are available to you?
  • Do you need help to opt out if you choose to? If so, who can you go to for help?

If you have weighed up the options and are still unsure, the Ottawa Personal Decision Guide may be a useful tool to guide you through the process.

The Case to Opt In

The Case to Opt Out

If I opt out, is my decision final?

If you opt out of My Health Record before the 31 January 2019, you can then decide to opt in at a later date. If you do not opt out, but later decide that you no longer wish to have a My Health Record, you can choose to have your record deleted. Cancelling your record will permanently delete your My Health Record.

How do I opt out?

If you decide you would like to opt out, you can do that on the My Health Record website or by calling the Helpline on 1800 723 471 or you can click this link

You can check the Help Line wait times here

To opt out of My Health Record, you need to verify your identity.

You will need:

  • your Medicare Card, or Department of Veteran’s Affairs (DVA) card, and
  • one of the following forms of Australian identification:
    • your driver licence; or
    • your passport; or
    • your ImmiCard

Please email us if you have any concerns regarding the My Health Record and we will ensure you are given access to the information you need.

Digital Health – where are we at?

By Pip Brennan, Health Consumers’ Council Executive Director

My Health Record

Since January 2019 when the opt-out period ended, 90% of Australians have ended up with a My Health Record. Like all our state counterparts, we were funded by the Australian Digital Health Agency to circulate information materials on My Health Record via our networks. We have noted that some social media posts have attracted concerns from consumers, and have communicated these to the Australian Digital Health Agency.

We also undertook a survey to explore the issues important to consumers, and gain an understanding of real-life experiences of using My Health Record. We are currently compiling the results of this survey, and you will be able to find them on our My Health Record web page soon.

On 11 December the CEO of the Australian Digital Health Agency, Tim Kelsey, announced his resignation. A new appointment will be made early next year.

WA’s new Digital Health Strategy

As noted elsewhere in this edition, this strategy was released in October 2019, almost a year to the day of the last stakeholder engagement HCC was able to be part of. Now the Strategy has been released, it’s clear that the main goals require an electronic medical record. The scale of this undertaking is not to be under-estimated. The WA Health Information and Communication Technology Consumer Reference Group re-convened in November 2019 and there are hopes for more robust engagement and a co-design process with consumers, clinicians and administrators to drive this project forward in the way it needs to go.

Data and Privacy

Meanwhile, WA’s Department of Premier and Cabinet has completed the Privacy and Responsible Data Sharing consultation, and submissions received are now being analysed and legislation drafted. It may surprise you to know that we are the only state without privacy legislation.

I contributed to an independent submission which was supported by Professor David Watts, former Victorian Privacy Commissioner, and Dr Bridget Bainbridge, whose inputs were kindly supported by the Minderoo.

The submission argued for an innovative approach to the drafting, rather than merely “cutting and pasting” other state’s legislation, first written in the 1980s. Our world has changed beyond recognition since then, and Europe has led the way in developing the General Data Protection Regulations which seek to uphold civil rights. Th argument was made to aim for something along these lines that will allow us to more easily participate in international research.

Data is the new oil

It has often been noted that three enormous enterprises, Amazon, Google and Facebook, do not charge for their products. That is because the data they harvest from their platforms is far more valuable and marketable than membership fees. It is vital that as citizens we do not “give away the farm” when it comes to our health data. There have been alarming precedents in other countries where health data has been swapped for “innovation” – so that the costs of developing a platform, for example, are not met by the public purse. But what is the cost of this in terms of loss of privacy, in leaving ourselves open to having our data re-packaged and sold back to us?

Meanwhile, there is a confusion in the public mind about how much data is shared between government agencies. There is an expectation that data is shared much more than it really is. The excuse of “privacy” is often invoked by government agencies keen to control what information is shared and avoid contentious issues reaching the light of day, or stymie the ability of people to seek redress.

While in WA it was noted that our lack of privacy legislation is hampering data sharing, in all other jurisdictions where privacy legislation exists, it is invoked as a reason not to share data. As always, culture is a key driver of how policy and legislation is enacted.

In Australia there is no independent, publicly funded app for My Health Record. There are three commercial providers who provide apps, and as we saw in 2019 with the Health Engine debacle, in some states our data was being on-sold to third parties – which consumers had consented to with one click, without any real understanding of what we were consenting to. The phenomenon of signing away our rights is endemic. The Norway Consumer Council worked out that it would be quicker and faster to read the New Testament than it would be to wade through the terms and conditions of 33 apps on your average smart phone.

What to do?

As always, a “buyer beware” approach is important. If something is free (Facebook for example), then you’re for sale. Many of us make this call because what we receive is worth the (largely invisible) cost of obtaining something we want right now, which is the functionality of what the app offers.

 

Does this topic interest you? Would you like to stay in touch with projects and initiatives in data and IT, email us at info@hconc.org.au with Digital Health as the subject line.

You might also want to listen to this episode of Big Ideas exploring this complex topic.

 

Feedback sought about making complaints or giving feedback to health services

In 2020, Health Consumers’ Council (HCC) worked with the Patient Safety Surveillance Unit in the Department of Health to learn more about how consumer feedback – including complaints and compliments – is collected, provided, and used for improving health services. We held a number of workshops with consumers and we also held telephone interviews with some consumers in regional areas. We held targeted sessions for Aboriginal community members, and Consumers of Mental Health WA ran a targeted session for consumer of mental health services.

When we talk about feedback we mean both compliments and complaints. It includes feedback you give in writing, as well as feedback you give by telling someone in person or on the ‘phone.

In summary, these were the key issues from the consultation sessions HCC hosted:

  • There are many barriers to giving feedback or making a complaint – most of which WA Health can influence
  • Importantly, people from all groups described how difficult it was to find out how to give feedback or make a complaint.
  • Feedback mechanisms don’t match the complexity of the system
  • Many people experience the responses received to feedback or complaints as impersonal and unhelpful
  • Many Aboriginal people described experiences of racism in the health system which impacted on the likelihood and way they give feedback or make a complaint. There is much more to do to embed feedback mechanisms that are experienced as culturally safe by Aboriginal people.
  • Providing feedback is often an emotional experience – a trauma-informed response could help create an environment where staff are more able to receive feedback and consumers are more supported to provide it.

These were the barriers to giving feedback:

  • A prominent reason for not giving feedback is simply that people were not asked. There was a strong theme in the workshops about providing consumers with opportunities to give feedback “in the moment”. Suggestions included putting information next to hospital beds and making this known to people and having a visible presence – in the shape of a person – in a prominent place in a health service.
  • Lack of time and energy on the part of the consumer – dealing with one’s health (or that of their family) is already time consuming.
  • Unsure of the process for giving feedback/making a complaint
  • Have previously had a negative experience of giving feedback
  • No confidence that investing the time and energy in giving feedback will result in positive change
  • Fear of being treated less well as a result of making a complaint – this was particularly prominent from people living in regional areas
  • Literacy and language issues

What consumers would like:

  • A system where it is easy to give feedback.
  • Information about giving feedback or making a complaint that is
    • more visible
    • clearer
    • proactively given – seek feedback throughout the process of care
  • Ways to collect feedback that include
    • Culturally safe options for Aboriginal people
    • More face to face options
    • More options that don’t require written feedback
    • More opportunity to give feedback in the moment
  • A more personalised and caring response
  • A streamlined consistent process that
    • Is simpler
    • Is consistent between health service sites
    • Is focused on the needs of the consumer not on the needs of the system
    • Includes a clearer and more effective process for complaints that are complex or that relate to multiple parts of the system
  • More support to provide feedback
  • More independent support focused on the interests of the consumers
    • Focus on removing barriers to giving feedback
  • Accountability
    • More external review of complaints and feedback process
    • Assurance that feedback leads to positive action and change.A row of four people holding blank speech bubbles above their heads

(Updated 17 July 2020)

Community Conversations in Healthcare

Community conversations may be with a mixture of ethnicities or one community or faith/language group. Sessions are free to attend. The sessions offer a relaxed and engaging environment that aims to:

  • increase participants’ knowledge about rights and responsibilities in healthcare
  • help participants understand the different health services in Western Australia
  • provide an opportunity for participants to ask questions about the health system or health services in Western Australia
  • enable participants to express ideas, concerns and recommendations about health issues affecting them, their family or their community.

2020 Community Conversations are in the planning stage.  Watch this space for more information.

If you are a CaLD community member interested in hosting or helping to organise a community conversation, please contact Nadeen@hconc.org.au. This is a free service.

 

 

Tell someone if they’ve had a positive impact on your experience of the health system

 

Tell someone if you’ve had a positive experience

For Health Service providers

  • You can download this poster to let people know about the postcard
  • You can use the HCC logo and our Patient Experience Week logo to help promote the postcards
  • You can email us on info@hconc.org.au if you need more information or would like the postcard in InDesign format

Studies suggest that saying thank you can lead to a 50 per cent increase in helpfulness – so by expressing your thanks for a job well done, you could be helping to make the health system just a bit better!

Patient Experience Week is an opportunity to celebrate and acknowledge the ways that staff in health services can have a positive impact on our experience of the health system. We encourage you to let someone know if they have helped you have a positive experience in the health system. Just fill in one of these postcards with their name and a note, and hand it or email it to the team. We welcome carers and family members to also fill out a card when they have a positive experience.

Thank you!

Empowering Health Consumers with Disabilities

Resource list for people living with a disability (plus associated needs) and their carers, family and friends

HCC partnered with People With disabilities WA to deliver a project which examined health literacy materials and put them to the test of disability friendliness. The project delivered nine training sessions on Disability Health Rights for people with disabilities, and their carers, family and support people. Topics covered included: rights, ideas for getting better care, where to go for help, medical records and information sharing, and navigating the health system.

A series of booklets and videos were produced for this project, and are linked below. Working group members also shared their views on how health services could engage more with people with disabilities at this blog article:

Plain English

Easy-read

Plain-text (screen-reader compatible)

Videos 

 

 

 

 

 

Procedure Specific Information Sheets

The Procedure Specific Information Sheets Lite provide written information about your treatment. They are written by qualified and practicing consultant surgeons and physicians, with input from other relevant health professionals.

Your doctor can provide you with the full sheets, which are usually four pages long. You can ask for these when you attend your appointment.

https://ww2.health.wa.gov.au/Articles/N_R/Procedure-Specific-Information-Sheets

https://ww2.health.wa.gov.au/Articles/N_R/Procedure-Specific-Information-Sheets

The operation and treatment information on this page is published under license by Health Consumers’ Council (WA) from EIDO Healthcare Australia and is protected by copyright laws. Other than for your personal, non-commercial use, you may not copy, print out, download or otherwise reproduce any of the information. The information should not replace advice that your relevant health professional would give you.

 

Want to advertise or submit an article to Health Matters?

Advertising in Health Matters Magazine

Health Consumers’ Council (WA) Inc (HCC) has produced Health Matters quarterly magazine since its inception in 1994. Since mid-2015 HCC each issue has focused on a theme, with articles sourced from key stakeholders across WA and Australia. A call for features goes out through HCC’s media channels and key people are approached to contribute. Click here for more information on how you can advertise with us or contact the Health Consumers Council on (08) 9221 3422.

Health Matters Reach:

  • Direct marketing to a community of 1000+ individual and organisational members plus interested community members based in WA, including key people and organisations in WA health
  • Promoted through HCC social media channels (Facebook, Twitter, LinkedIn and Instagram) to a combined reach of 25k+ per month
  • Used as promotional material at all Health Consumers’ Council events, partnership events and external events where HCC has a stall
  • All past issues feature on HCC’s website, with many articles re-purposed as blog posts

Health Matters Magazine Article Submissions

If you would like to submit an article for consideration, it should be no more than 600 words, plus high resolution photographs (2 MB or higher) if available attached as a JPG or PNG file.

As a general rule, all submitted articles should meet the following criteria:

  • Directly related to health care and health care consumers in WA
  • Information for people involved in the WA health system
  • Non-commercial interests

Please send your submissions to info@hconc.org.au. Please note that submitting an article is no guarantee the article will be published as is, or even at all. Please don’t hesitate to contact us on 9221 3422 to discuss.

My Health Record Webinar 1 – Privacy and Security – Key Takeaways

Consumers Health Forum has been funded by the Australian Digital Health Agency to run a series of free webinars on My Health Record. You can register for them here.

The webinars are just under and hour, and are available on replay on the link above. As everyone is so busy, I have watched this and include key takeaway messages which I have summarised from comments made.

  1. There are three options for consumers – opt in, opt out or opt in but include protections on data you don’t want to be publicly available. (Karen Carey)
  2. You have to make the assumption that the data you have in My Health Record may at some time be inadvertently made public and identify your own risk level and mitigate that risk by using security controls. It is not helpful to try and assuage consumer concern by talking about how high-grade the security is and that a breach will never occur. The chances are it will, so consumers need to proceed on that basis. (Karen Carey)
  3. Risk mitigation means considering your own personal circumstances and make sure that any relevant information is not included (Karen Carey)
  4. My Health Record is just a summary of the rich data that at GP or specialist may have about you – a summary page, not the whole thing (Charlotte Hespe)
  5. You can work with your GP on the summary – (Charlotte Hespe)
  6. The protections on our data and privacy over the last thirty years have been eroded, drip by drip. Policy and legislation can be altered and so we do need to be mindful of this when given assurances that our data won’t be shared with other agencies. (see point 2) (Bruce Arnold)
  7. These are important conversations about My Health Record but a) they should have taken place some time ago and b) they need to be with a much broader audience (Karen Carey and Bruce Arnold, various comments)

I have had a My Health Record for three years now, and when I applied you needed to have all your key documents with you and it was a cumbersome process. There was not much data on it but it is increasing. I personally feel like Facebook knows more about me that the Australian Government ever will. My Health Record is a necessary step towards simplifying our complex health system and literally saving people’s lives by the access to key information about allergies and medications. However, as it was mentioned several times in the webcast, people’s care will be impacted by certain things – mental health diagnosis, drug and alcohol history and on and on – for myself personally this is not an issue and it is important to consider your own circumstances. If in doubt, opt out.

How easy the privacy controls will be for someone with no or low literacy or minimal computer access is not really considered, as in so much of how our systems work.

Panellists:

Kim Webber – General Manager, Strategy at the Australian Digital Health Agency
Karen Carey – Consumer Advocate, former chair of CHF and Chair of the NHMRC Community and Consumer Advisory Group
Dr Bruce Baer Arnold – Assistant Professor, Law at University of Canberra and Vice-chair of the Australian Privacy Foundation Board
Dr Charlotte Hespe – GP, Glebe Family Medical Centre and RACGP Vice President

 

Pip Brennan, Executive Director, Health Consumers’ Council

My Health Record

Have your say on My Health Record

Health Consumers’ Council partnered with Australian Digital Health Agency to help West Australians get to know My Health Record better. We’ve been sharing content through our social media, website and newsletters, and followed this up with a survey to find out your views on My Health Record. The survey is now closed, and the results will be uploaded soon.

The latest resources on how to get the most out of your My Health Record

By now, you will have either had a My Health Record created for yourself, or opted out of having one created.

If you are using My Health Record, we recommenced you log in to take a look at your information and update your privacy settings. These brochures provide further information on how to use your My Health Record now that it has been set up.

Do you have a My Health Record?

Since the opt out period ended, My Health Records have been created for the 90% of Australians that did not choose to opt out. These FAQs below were created to inform people’s decision whether or not to opt out. You always retain the right to delete your My Health Record, and you always retain the right to apply for one.

It’s important to note that it is not a complete record. It is not truly digital, either. It is essentially an online folder for your health documents. However, it does make that important link between our federally funded health services (GPs, Medicare, and medications data) and our state funded services (our hospitals).

Over 2019, the Australian Digital Health Agency plans to roll out consumer information about how to use My Health Record. The first of this information includes the brochures above, and more will follow.

How can I find out more?

Check out these Frequently Asked Questions

What is My Health Record?

My Health Record is an online storage and management system for each individual’s health information, such as prescriptions, vaccinations, allergies, and results of pathology tests. My Health Record only contains a summary of your health information, not a detailed record like your GP would keep. My Health Record is administered by the Australian Digital Health Agency (ADHA).

My Health Record does not replace records currently held by your health providers, such as your GP or hospital; it is an additional collection of health summaries. You control what appears in your My Health Record, and who can see the information contained in it.

Summary information flows into an individual’s My Health Record from Medicare, GPs, public and private hospitals, specialists, pathology, diagnostic imaging, allied health, and aged care. If you have a My Health Record created, the last 2 years of information from your Medicare record will be added to your My Health Record. No past information from other sources will be added. For example, any hospital visits you have had prior to your My Health Record being created will not appear.

Many people already have a My Health Record already as it’s been available for several years. It was previously known as a Personally Controlled Electronic Health Record (PCEHR) or eHealth record. However, now all Australians will have a My Health Record made for them automatically unless they opt out by 31 January 2019.

You can read more here

Do I already have a My Health Record?

All Australians now have a My Health Record, unless they chose to opt out before 31 January 2019 or have since deleted their My Health Record.

You can find out how to access your My Health Record here.

How can I be sure information about My Health Record I'm reading is reliable?

When assessing any information about health, some of the key questions to ask yourself are:

WHO WROTE THIS?

Reliable sources of information include government publications, peak bodies, and government-endorsed sites. If it is not clear who is running or funding the site you are looking at, visit the About Us or Contact Us pages to find out. If you still don’t find an answer there, consider looking for another site altogether. A reliable source of information will be transparent about their who they are and their sources of funding.

WHAT IS THE EVIDENCE FOR WHAT THEY ARE SAYING?

Information is likely to be trustworthy if is based on reputable research or official documents you can refer to. Testimonials or opinion are not reliable sources of health information.

IS IT AN OBJECTIVE VIEW?

Does the information seem balanced? If the site is published by a private company or special interest group, consider also seeking out another point of view to see if there are other ways to think about the issue.

IS IT UP TO DATE?

Some of the information about My Health Record has changed rapidly. Make sure the information you read to inform your decision has been published recently.

Read this Health Direct information sheet about health information or this one from the Children's Hospital, Westmead

Is there a list of terms and definitions to help me work out what it's all about?

See this glossary of terms from the Australian Digital Health Agency website

What about privacy?

If you have concerns about the security of your information, increasing the security restrictions on your account may be enough to satisfy you. The security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when. See here for more information about how to set privacy and security controls.

See here for the My Health Record Privacy Policy

Can I set controls on my own My Health Record?

Yes you can. You can set a PIN on your whole My Health Record so that your health provider has to have you in the room before they can access it. You can also lock down individual documents.

My Health Record's security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when.

See here for more information or check this Privacy Fact Sheet from the Office of the Australian Information Commissioner.

Can I see who has viewed my record?

Yes you can, although it is usually at the health service level, it won't give you the name of the individual health professional who has viewed your record. Have a look here to find out more.

What about young people?

As a protection for the privacy of young people, parents are currently not able to access the Medicare information of a child over the age of 14. However, a parent is able to access their child’s My Health Record until the child turns 18 unless the child chooses to take control of their own record. Young people can take control of their own record from the age of 14.

Follow the links below for some further information that young people and their carers may wish to read.

The Conversation - Freezing Out the Folks

You Can Take Control of Your My Health Record from 14 Years of Age

What about family and domestic violence?

People vulnerable to domestic and family violence, who wish to keep their location details secure, may need to consider whether having a My Health Record presents a risk to them. You may choose to use My Health Record anonymously, or using a fake name (known as a pseudonym)

See this brochure here from the Australian Digital Health Agency on their webpage

See also this resource form the Women's Legal Service Queensland - Women and My Health Record

What if I'm worried about stigma? I have a sensitive health issue

If you have a health issue or life circumstance that you consider sensitive, you may wish to investigate the potential implications of sharing your health information via My Health Record. The risk of stigma and discrimination by health care workers may be a worry for some people, such as those carrying a blood borne virus, or those who have been affected by the justice system. The potential of a data breach that exposes personal information is also a serious concern for some people.

Sensitive issues or circumstances may include:

  • sexual health
  • mental health
  • degenerative disease
  • health care worker
  • drug use
  • criminal record
  • blood borne virus
  • sex worker
  • lesbian, gay, bisexual, transgender, or intersex
  • pregnancy, or termination of pregnancy

If you are in any doubt, you may want to consider opting out, or setting higher privacy controls such as a PIN for the whole Record

Can I use a fake name to protect myself?

Yes you can. The technical term for a fake name is a pseudonym. You can use a pseudonym for privacy reasons, for example you can use a different name for you or your children when you get healthcare.

To do this, you need to apply for a pseudonym Individual Healthcare Identifier (IHI) through the Department of Human Services (DHS). You can then use this name to register for a My Health Record.

Your pseudonym IHI isn’t linked to your Medicare information, so this information will not be available in your record.

You will not be identifiable or traceable through your pseudonym.

You can choose to have a My Health Record using your real name as well as a fake name (known as a pseudonym), and you have the option to merge these two records at any time.

To apply for a pseudonym IHI, you can call DHS on 1300 361 457.

What if I don't speak English, or am not confident with language?

Languages other than English can be accessed here

The My Health Record website contains a number of plain text and easy to read fact sheets for people who have difficulty reading and understanding written information. Some of these fact sheets are specifically designed for Aboriginal and Torres Strait Islanders. Interpreting assistance in languages other than English is available by calling 131 450.

Many sections of the My Health Record website contain videos which explain the information on the page.

See the Accessible Information page on the Australian Digital Health Agency page

What if I don't have internet access or am not internet savvy?

Each individual is responsible for setting the level of security on their Record, and ensuring that information on your Record is accurate and up to date. This information includes your contact details, and ensuring that you agree with the contents of information uploaded by others. Anyone who is not able to do this may wish to consider whether this is a risk to them. However, if you don’t have internet access, you can call the My Health Record helpline on 1800 723 471 to access your information. Helpline staff can tell you which documents are in your My Health Record but not what each document contains.

Who will benefit most from My Health Record?

My Health Record will give your healthcare provider a clear and complete record of your tests, medicines, and treatments, without you having to record this yourself, or communicate it to your provider. This could be particularly helpful to people who:

  • Are elderly
  • Have communication difficulties
  • Have English as a second language
  • Have cognitive or memory difficulties
  • Have severe allergies or other conditions
  • Take multiple medications
  • Have complex health conditions
  • See multiple healthcare providers
  • Live in a rural or remote area

A central record of your medical history means that you do not need to be responsible for remembering all of your health information, and your history is available to health professionals in a medical emergency.

Should I opt out or opt in??

Take the time to read about the factors that matter to you so that your decision is well informed.

  • Are you clear about the risks and benefits of each option? If not, do you know where to find more information?
  • Are you clear about the aspects of the decision that affect you personally?
  • Do you need advice and support to make this decision? If not, what reliable sources of advice and support are available to you?
  • Do you need help to opt out if you choose to? If so, who can you go to for help?

If you have weighed up the options and are still unsure, the Ottawa Personal Decision Guide may be a useful tool to guide you through the process.

The Case to Opt In

The Case to Opt Out

If I opt out, is my decision final?

If you opt out of My Health Record before the 31 January 2019, you can then decide to opt in at a later date. If you do not opt out, but later decide that you no longer wish to have a My Health Record, you can choose to have your record deleted. Cancelling your record will permanently delete your My Health Record.

How do I opt out?

If you decide you would like to opt out, you can do that on the My Health Record website or by calling the Helpline on 1800 723 471 or you can click this link

You can check the Help Line wait times here

To opt out of My Health Record, you need to verify your identity.

You will need:

  • your Medicare Card, or Department of Veteran’s Affairs (DVA) card, and
  • one of the following forms of Australian identification:
    • your driver licence; or
    • your passport; or
    • your ImmiCard

Please email us if you have any concerns regarding the My Health Record and we will ensure you are given access to the information you need.