Introduction to the My Health Record Webinar Series

My Health Record moving to an opt-out model is the most important digital health change for consumers in Australia in 2018. We see My Health Record as a key step in the shift from health consumers as passive patients, to consumers as active partners in our own care. Every Australian with a Medicare or Department of Veteran’s Affairs number will have a My Health Record created for them in 2018, unless they choose to opt-out of having one created.

All Australians should consider the benefits and risks of My Health Record in the context of their own lives before making their decision.

To help consumers make an informed and considered decision about whether or not to opt-out of having a record created for them, we are holding a series of 6 webinars starting in mid-August that cover the key information people need to understand the benefits and risks of My Health Record in the context of their own lives. The webinars will include knowledgeable panellists and provide a chance for consumer questions to be asked of them.

Summaries and other 'bite-size' content based on the information covered will also be released after the webinars.

Each webinar will focus on a different area of important information or decision that a person has to make in order to arrive at an informed decision. Those steps are summarised in the flowchart below.

A central hub for everything to do with the webinar series is available here: https://chf.org.au/hub-my-health-record-webinar-series.

We are collecting key information on the webinars, how you can ask questions before the webinar, register for each of the webinars, and find the outputs created after the webinars in this section of our website. Use the links at the bottom or to the right of this section to navigate through each part, or head to the My Health Record Webinar Series Hub to get started.

 

Hub - My Health Record Webinar Series

 

My Health Record webinar series

To help people make an informed decision about My Health Record and whether to opt-out, we have held series of 6 webinars during the opt-out period. The webinars aim is to provide balanced, independent, factual and authoritative information about My Health Record and the opt-out process, and gave people a chance to have some of their questions answered.

More information on the goals and purpose of this series is available here: chf.org.au/introduction-my-health-record-webinar-series

These webinars have been made possible through funding provided by the ADHA. CHF and the ADHA have signed an MoU that protects CHF’s right to speak independently.

What decision do I need to make?

If you don't already have a record, by 31 January 2019 you can decide to;

  • Do nothing and let a record be created for you
  • Opt-out of having a record created by completing an online form or calling the ADHA on 1800 723 471
  • Register now for a record and start using it.

Go to the webinars ⯆

CHF publications on My Health Record

Go to the webinars ⯆

Recent Submissions, Blogs and Media Releases on My Health Record are collected below. For a complete list of CHF's media and publications on digital health, click here: chf.org.au/digital-health-media-and-publication.

 

Webinar 1: Privacy and Security

The opt-out period for My Health Record began recently, prompting much greater scrutiny of the project by media and the public. Central to that scrutiny has been questions of privacy and security of the system.

In this webinar, we briefly covered My Health Record in general, then open a panel discussion that will focus on the privacy and security of the system, how legislation and policy affects it, and whether and what changes should be made to improve the privacy and security of My Health Record.

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

Find out More

 

Details

Date and Time: 12:30pm AEST, 8 August 2018
Recording: youtu.be/5yhx4WZP6EM
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_1.pdf

Watch the Video

Click the image above to view our Privacy and Security of My Health Record webinar.

"I, myself, have had five open heart surgeries and yet I still sometimes and the emergency department people say to me, "Do you suffer from anxiety attacks?" So I know that stigma is real and it's real at emergency times when people don't want it to be so I understand why people are sensitive, but having that in their record."
- Karen Carey, Consumer Advocate, former chair of CHF and Chair of the NHMRC Community and Consumer Advisory Group

See her full answer at 1:00:00

"We need to look a bit beyond what we're hearing, and be I think hard headed, and think about what are the implications, discrimination perhaps, stigma, care, and ultimately respect for individuals. If the government was so concerned about privacy, why does it have to wait till five minutes to 12? "
- Dr Bruce Baer Arnold - Assistant Professor, Law at University of Canberra and Vice-chair of the Australian Privacy Foundation board

See his full answer at 20:43

 

Webinar 2: Overview of Digital Health

To properly understand My Health Record, it is important to know where it fits in the larger digital health landscape in Australia.

In this webinar, we discuss among other topics how My Health Record currently and could in the future interact with the rest of the Ausrtralian health system, the safety and quality impacts of digital health, and what else is happening in digital health.

Panellists

  • Garth McDonald, General Manager of Service Delivery, ADHA
  • Dr Christine Slade, Consumer Advocate
  • Dr Ian Hickie, Co-Director of the Brain and Mind Centre at the University of Sydney

Find out More

 

Details

Date and Time: 3pm AEST, 23 August 2018
Recording: youtu.be/jBHkHqlQvhI
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_2.pdf

Watch the Video

Click the image above to view our Overview of Digital Health in Australia webinar.

"As a patient in a hospital that had paper and going across many different departments, I was always pleased to see the file arrive. I didn't realize at one point that it didn't have a summary page and that I was actually now the source of truth for my own care, which frightened me quite a lot."
- Christine Slade, Consumer Advocate

See her full answer at 13:00

"I'm trying to take care of someone with a complex manic depressive bipolar illness. Has a bit in a hospital. Patient was taken care of yesterday. She got immune data in one hospital. She got medication data in another hospital. She doesn't know herself what all the answers to all those questions are, some as unreported, I'm traveling. I'm supposed to be making decisions about medications descriptions now using a 19th century system."
- Dr Ian Hickie, Co-Director of the Brain and Mind Centre at the University of Sydney

See his full answer at 11:00

Resources

 

Webinar 3: Benefits of My Health Record

A My Health Record system with the majority of Australians enrolled has many potential benefits for the health system in Australia.

In this webinar, we discuss among other topics the benefits to the individual, the benefits to the health system, the barriers to realising benefits and what work is underway to measure benefits. This will include a discussion of some of the risks and limits, however the risks will be looked at in greater detail in following webinars.

Panellists

  • Dr Amandeep Hansra – GP, ADHA Clinical Reference Lead, former CEO & Medical Director of Telstra’s telemedicine business, ReadyCare
  • Russell McGowan – Consumer Advocate
  • Dr Chris Pearce - GP, Academic, President of Australasian College of Health Informatics
  • Dr Chris Freeman - Pharmacist, Vice president Pharmaceutical Society of Australia

Find out More

 

Details

Date and Time: 12:30pm AEST, 30 August 2018
Recording: youtube.com/watch?v=xdOpbG8ZJo8
Transcript:chf.org.au/sites/default/files/transcript_-_webinar_3.pdf

Watch the Video

Click the image above to view our webinar on the Benefits of My Health Record.

"My Health Record will assist in delivering person-centred health care, which is what it should be about. So clinicians will want to use it if they want the best outcomes for their patients and if they want their patients to be partners in their own health care."
- Russell McGowan, Consumer Advocate

See his full answer at 58:59

"Four times in the last couple of months I've had useful information that I've accessed through somebody's My Health Record that the patient hadn't told me, or had forgotten to tell me, and I didn't have access to it within my system. It's just raised up for me the whole point about how this should be patient-centered information, not hospital-centered and clinician-centered information. And until we get to that point, we're always gonna be making mistakes and having trouble."
- Dr Chris Pearce - GP, President of Australasian College of Health Informatics

See his full answer at 6:00

 

Webinar 4: Risks of My Health Record

Understanding the risks of My Health Record as they apply to your own life is a vital step when deciding about whether to have a My Health Record or not.

In this webinar, we discuss among other topics the risks to privacy and security, the risk to community perceptions of the intersection between the health system and government, and what measures are in place to manage and mitigate these risks. This included a discussion of some of the benefits, however the benefits will be looked at in greater detail in a previous webinar.

Panellists

  • Tony Kitzelmann – ADHA Chief Information Security Officer and General Manager for the ADHA Cyber Security Centre
  • Dean Martin – Consumer Advocate, ADHA Consumer Advisory Committee member, Research Manager at Black Dog Institute
  • David Hansen – CEO of the Australian e-Health Research Centre, Chair of the Health Informatics Society of Australia board
  • Aaron Cogle – Executive Director, National Association of People with HIV Australia

Find out More

 

Details

Date and Time: 12:30pm AEST, 6 September 2018
Recording: https://youtu.be/M59yAJt_njM
Transcript chf.org.au/sites/default/files/transcript_-_webinar_4.pdf

Watch the Video

Click the image above to view our Risks of My Health Record webinar.

"The risk that I think My Health Record poses is the possibility that people won't be able to be open and frank with their doctors because there is, in the back of their mind, a fear of that information won't stay between them and their doctor, and that there could be issues around criminalization or indeed any use that is not for a specifically health related issue will curtail people's ability to speak open and frankly to their doctors."
- Aaron Cogle, Executive Director, National Association of People with HIV Australia

See his full answer at 4:19

"People say it's just a big database and the doctor can jump on or the health care provider can jump on and just browse the database. It's actually not correct. To be able to actually access the database, they need to conduct a conformance search, they need to have a software, they need to registered with us. And we audit all of that. We also, as part of our commitment ... and this an evolving capability that we've got going on as part of our enduring service, is to provide user behavior analytics so that we can actually look at what normal is and how health records are interacted with as part of a normal consumption pattern."
- Tony Kitzelmann, ADHA Chief Information Security Officer and General Manager for the ADHA Cyber Security Centre

See his full answer at 20:43

Resources

 

Webinar 5: Digital Inclusion and Health Literacy

To be able to effectively use My Health Record, a person must have a sufficient level of digital, data and health literacy. They also need to be able to access digital tools. Making a decision about whether or not you should have a My Health Record requires a person to make an assessment of their digital and health literacy, but it also raises important ethical questions about the merits of an opt-out model for the whole population.

In this webinar, we will discuss among other topics what skills are required to use My Health Record, the level of digital inclusion in Australia and discuss the ethics of the decision to opting people with low digital or health literacy into the My Health Record system.

 

Panellists

  • Karen Gallagher, ADHA, General Manager – Implementation, My Health Record
  • Dr Chris Moy, GP, Chair of the AMA Ethics and Medicolegal Committee
  • Louisa Walsh, Consumer Advocate, Researcher at La Trobe’s Centre for Health Communication and Participation
  • Mohammad Al-Khafaji, FECCA, Director – Strategy and Engagement

Find out More

 

Details

Date and Time: 3pm AEST, 13 September 2018
Recording: youtu.be/B-9Z7KpQqW0
Transcript chf.org.au/sites/default/files/transcript_-_webinar_5.pdf

Watch the Video

Click the image above to view our webinar on Digital Inclusion, Health Literacy and My Health Record.

"As My Health Record becomes more interactive, as it becomes more person controlled and person centered, then there's this increased need to address the barriers of digital and health literacy."
- Louisa Walsh, Consumer Advocate and Researcher at La Trobe’s Centre for Health Communication and Participation

See her full answer at 23:31

"Information availability is really key to literacy. My Health Record is a big change and a big shift in people being able to be more involved in their care or for their carers or their family to be involved in their care because they've got information about themselves."
- Karen Gallagher, ADHA, General Manager – Implementation, My Health Record

See her full answer at 5:39

Resources

 

Webinar 6: Consumer Estimates

The final webinar of the series was an opportunity to summarise what has been covered, and put any remaining questions people had about My Health Record directly to representatives of the Federal Government.

In this webinar, a panel of health consumer advocates asked questions of a panel of representatives from the Federal Government, in a style similar to Senate Estimates. The consumer panellists also shared their thoughts and experiences with My Health Record.

 

Panellists

Representatives from Government:

  • Karen Gallagher, ADHA, General Manager – Implementation, My Health Record
  • Kim Webber - General Manager, Strategy at the Australian Digital Health Agency
  • Michael Frost, AIHW - Group Head, Primary Health Care and Veterans Group

Consumer Panellists:

  • Paige Burton - Consumer, 2017 Australian Youth Representative to the United Nations
  • Sharon Tonkin - Consumer and carer with 40+ years of rural health experience
  • Marc Niemes - Consumer, Digital and eLearning business founder, "Health is not something done to you, it is something you take part in"

Find out More

 

Details

Date and Time: 2pm AEDT, 17 October 2018
Recording: youtu.be/Ttz3eWx6BMU
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_6.pdf

Watch the Video

Click the image above to view our Consumer Estimates webinar.

"

"What is the point of that data? What is it being used for? People just want a bit more transparency around it. I don't think that's unreasonable. We can't just say, "People have suddenly learnt something and they're angry about it," when actually we've seen time and time again things like this happen across the world."
- Paige Burton, Consumer, 2017 Australian Youth Representative to the United Nations

See her full comment at 55:40

"I hope I'm not flogging an issue, but I think we need to remember that there's a lot of people in the rural setting in the age bracket who can't even get money from the bank anymore, because they can't use an ATM and the bank's no longer in town. I think people with polypharmacy and comorbidities have got a huge gap in their IT abilities. We're going to have people who desperately need a centralized record not able to do any of this, and that worries me considerably."
- Sharon Tonkin, Consumer and carer with 40+ years of rural health experience

See her full answer at 39:24

The Basics of My Health Record

What is My Health Record?

My Health Record is a national electronic health record system that can give you and your health providers better access to your health information. Until 2018, it has been an opt-in system where only people who signed up for it had a record created for them.

Now, My Health Record is changing to 'opt-out', meaning that unless you tell the Australian Digital Health Agency (ADHA) that you don't want a record created for you by 31 January 2019, then a record will be created for you. You can cancel that record at any time.

We see My Health Record as a key step in the shift from health consumers as passive patients, to consumers as active partners in our own care. We also think the every Australian should think about what the benefits and risks of My Health Record mean for you.

During our first webinar on Privacy and Security of My Health Record, the ADHA's General Manager of Strategy gave a good answer on what information can be included in a My Health Record. You can watch her 2 minute answer here. Her answer included;

  • Event summaries from when you've been to visit a clinician or a hospital
  • A shared health summary, written by you and your GP
  • MBS and PBS information
  • Advance Care Directive
  • Pathology and diagnostic imaging reports
  • Organ donation status
  • Allergies

You can find more information on what is included on the official My Health Record website, www.myhealthrecord.gov.au/for-you-your-family/whats-in-my-health-record.

What decision do I need to make?

If you don't already have a record, by 31 January 2019 you can decide to;

  • Do nothing and let a record be created for you
  • Opt-out of having a record created by completing an online form or calling the ADHA on 1800 723 471
  • Register now for a record and start using it.

How does My Health Record work?

My Health Record is a centralised database of health information that can be accessed by you, a representative you nominate, or health professionals directly invovled in your care.

If you have a record, you can access it through MyGov or by calling the My Health Record helpline. You can also set a number of consumer controls to change which items are accessible, whether health providers will need to ask you for a PIN to see your whole record or an item on it and more. If you tell a health provider to not upload something to your record, they have to do as you ask. See here for more information on what My Health Record is and the controls you can set: www.myhealthrecord.gov.au/for-you-your-family/what-is-my-health-record

Health providers whose workplaces have connected to My Health Record access it mostly through the clinical software they already use. A wide range of health providers are able to access your record when providing you care, however there are strict penalties in place if they access it at other times. Not all staff at a health provider can see your information either; if a GP clinic is set up correctly, then a GP's receptionist for example should only be able to see your basic details but not the rest of your health information. See here for more information: www.myhealthrecord.gov.au/for-healthcare-professionals/howtos/roles-and-responsibilities

How could My Health Record help me manage my health?

The most important benefit of My Health Record is the access it will give you to your health information. CHF sees it as a key step in the shift from health consumers as passive patients, to consumers as active partners in our own care. Without access to health information, it is more difficult for consumers to be part of the conversation about their care.

Having access to up to date medical information that keeps track of people’s medication and disease status is of great potential value to the millions of Australians with chronic and complex conditions and to their doctors who need to keep abreast of their patients’ care.

We also expect to see benefits like:

  • not having to remember and communicate all the details of past health issues,
  • better communication of allergies and Advance Care Plans,
  • more accessible information in an emergency,
  • fewer hospital admissions,
  • fewer adverse drug events from medication errors,
  • reduced duplication of tests, and
  • better coordination of care for people with chronic and complex conditions.

If you live with any chronic or complex conditions, you might be able to find information on how to best use My Health Record by talking to the consumer and community organisations who advocate for people with your issue. You can find many such organisations on our Find Consumer and Community Organisations page.

Where does My Health Record fit in the bigger picture?

My Health Record is just one piece of the digital health landscape in Australia. To properly understand My Health Record, it is important to know where it fits in the bigger picture.

Many people are surprised to learn just how disconnected the different parts of the health system are. Faxes, boxes of paper records, and phone calls chasing up information are the status quo. Many of us will also already have electronic health records of some kind, held by our GP, a hospital network or a pharmacy - but these records are rarely connected in any way, and you don't have access to them to see what is recorded.

See our Overview of Digital Health webinar for more information on how digital health works in Australia. This article in The Conversation by two academics from Monash University also provides a good explanation of the current state of health information in Australia.

Where can I find more information?

From others

Health Consumers Queensland have put together a great resource that covers a lot of the key information you should consider: http://www.hcq.org.au/our-work/my-health-record/

The My Health Record website is a good resource, and the help line is available 24/7 on 1800 723 471. The help line can answer many general questions, as well as assist with opting out or making changes to your record if you already have one.

The Office of the Australian Information Commissioner (OAIC) also have a number of good resources on My Health Record, particularly on privacy and how to make a complaint: https://www.oaic.gov.au/privacy-law/other-legislation/my-health-records

From CHF       

You can find all publications and media releases by CHF on digital health here: https://chf.org.au/digital-health-media-and-publications

Of particular interest might be something we wrote for Croakey in June - An important overview of the pros, cons and questions about My Health Record.

 

What are my health needs?

Before deciding whether any digital tool for helping you manage your health is right for you, it is helpful to have a think about your health needs, how you currently manage them, and how confident you are in learning how to use new digital tools.

You could ask yourself;

  • What health issues do I have?
  • How do I manage my health?
  • How confident am I with digital tools?

What health issues do I have?

Many of us are living with one or more health conditions that impact on our lives. Many more of us know that we are at risk of developing other health conditions, because of family history, lifestyle or environmental factors. The more health conditions you manage, the more benefit you might get from a digital tool that helps you keep track of test results, prescriptions and trips to the doctor.

It is important to consider as well that you can't always know what health issues are around the corner, or when you might need emergency care.

How do I manage my health?

Consider how you organise the management of your health conditions. Many people keep physical files of their health records, store them in the cloud or on a USB, while others rely on their health care professionals to store them.

If you have found it a challenge in the past to quickly summarise your health situation to someone new, or had to spend much time chasing up results or waiting for them to move from one health clinic to another, then a digital system that contains summaries of your health or improves how your health information moves from place to place may be useful to you.

How confident am I with digital tools?

Managing the privacy and security settings of the digital tools you use is important to make sure you're protected, and knowing how you can use a tool increases how well it works for you. For example, more and more health and wellness apps are available for smartphones, but they are not well regulated, meaning you have to exercise judgment.

Think too about how you can get help with digital tools. You can learn more about managing digital tools through programs like Be Connected, asking at your local library, or discussing it with family and friends.

Resources

 

What’s happening with the legislation for My Health Record?

This page was last updated on 26 November 2018.

My Health Record is governed by 3 pieces of legislation; The My Health Records Act 2012, My Health Records Rule 2016 and My Health Records Regulation 2012. The Healthcare Identifiers Act 2010 and the Privacy Act 1988 are also important for My Health Record.

Shortly after the start of the opt-out period in Juny 2018, the Federal Government announced they would move amendments to the My Health Record legislation. Those amendments would make it so that when someone cancels their record it would be deleted instead of archived by the government, and that any access to a person’s record by law enforcement or another government agency would require a court order.

Those amendments passed the House of Representatives, and along with a number of further amendments moved by the Government, Opposition and crossbench, were passed in the Senate on 15 November. On 26 November 2018, the amendments passed in the House and became law.

The legislation is called the 'My Health Records Amendment (Strengthening Privacy) Bill 2018' and you can find it and its amendments here: https://www.aph.gov.au/Parliamentary_Business/Bills_LEGislation/Bills_Search_Results/Result?bId=r6169

One of the amendments has been effectively implemented already, with the end of the opt-out period being officially extended to 31 January 2019.

The Australian Digital Health Agency has provided a summary of the changes here. The ADHA say the passed legislation will;

  • Explicitly prohibit access to My Health Records by insurers and employers.
  • Provide greater privacy for teenagers 14 years and over.
  • Strengthen existing protections for people at risk of family and domestic violence.
  • Allow Australians to permanently delete their records, and any backups, at any time.
  • Clarify that only the Agency, the Department of Health and the Chief Executive of Medicare (and no other government agency) can access the My Health Record system.
  • Make clear that the system cannot be privatised or used for commercial purposes.
  • Make the principles contained in the Framework to guide secondary uses of data law, and
  • Enact harsher penalties and fines for inappropriate or unauthorised use.

Where can I find more information about My Health Record?

From CHF       

Visit the ‘Hub’ for the My Health Record webinar series to find out more about how it all works, what you might want to consider when making your decision, and where you can find more resources to help you think it through: chf.org.au/hub-my-health-record-webinar-series.

Of particular interest might be something we wrote for Croakey in June - An important overview of the pros, cons and questions about My Health Record.

You can find all publications and media releases by CHF on digital health here: https://chf.org.au/digital-health-media-and-publications

From others

Health Consumers Queensland have put together a great resource that covers a lot of the key information you should consider: http://www.hcq.org.au/our-work/my-health-record/

This article in The Daily Telegraph provides an overview of the key issues: dailytelegraph.com.au/lifestyle/health/my-health-record-should-you-opt-out/news-story/

The My Health Record website is a good resource, and the help line is available 24/7 on 1800 723 471. The help line can answer many general questions, as well as assist with opting out or making changes to your record if you already have one.

The Office of the Australian Information Commissioner (OAIC) also have a number of good resources on My Health Record, particularly on privacy and how to make a complaint: https://www.oaic.gov.au/privacy-law/other-legislation/my-health-records

Webinar 1: Privacy and Security

 

Use these links to jump to different sections of this page:

 

Details

Date and Time: 12:30pm AEST, 8 August 2018
Recording: youtu.be/5yhx4WZP6EM
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_1_-_tables.pdf

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 M.B.B.S. Hons (Syd) DCH (Lon) FRACGP, FAICD - GP, Glebe Family Medical Centre and RACGP Vice President

The opt-out period for My Health Record began recently, prompting much greater scrutiny of the project by media and the public. Central to that scrutiny has been questions of privacy and security of the system.

In this webinar, we briefly cover My Health Record in general, then open a panel discussion that will focus on the privacy and security of the system, how legislation and policy affects it, and whether and what changes should be made to improve the privacy and security of My Health Record.

 

Resources

Timestamped Q&A

Click the minutes and seconds to go to the part of the webinar where the question was asked.

4:30 - What information is in an MHR, and what is the timetable for any further development of that information on the MHR?
6:55 - Who will have access to that record?
7:10 - How will last week's measures announced by the government fit the protections around release of your data?
8:20 - Where can people find easy to understand instructions about how to access and control the data?
9:55 - Can researchers access MHR data for research purposes?
11:20 - What about access by insurance and other companies to the identified data?
12:38 - As a GP from your perspective, what are the sorts of issues when it comes to privacy and confidentiality that strike you when we're talking about MHR?
17:30 - What sort of issues do you think as a long time health consumer advocate we need to be thinking about in terms of privacy and security with MHR?
20:40 - Bruce, what are the privacy and security issues to keep an eye on?
25:03 - But don't you have to put the benefits of such a system of having comprehensive health records for easy access by both the consumer and the patient. How much is that worth?
26:35 - Karen on medication safety
29:10 - What do you think about this issue that in the end, as Karen says, it's for the consumer to balance their beliefs, their needs, from the health system to balance the risk?
32:30 - Charlotte, on a related issue, some of the medical profession have been critical of the fact that if patients have a choice of what goes on and off their record, this may in fact endanger clinicians treatment decisions down the track. What's your feeling about this?
38:15 - Discussion on hospital IT practices and balancing vulnerability with ease of use
43:15 - We've had one of the email messages that's come through who says, "I assume that the comments by the gentleman on privacy apply equally to all clinical records."
44:00 - For the 14 to 17-year-olds who can apparently take control of their records, what does one do about educating both them and their parents about this if it comes to this?
so have a question from James who asks, "What sort of billing information is included on the MHR and how secure is this information?
ou delete information, does your GP made aware of it? Automatically no?
51:20 - Bruce - We're ignoring the human factor, we need to think seriously about risk, about autonomy and about respect.
52:15 - Karen, can I ask you what factors should patients who have the diagnosis of a stigmatizing illness mental health, HIV/AID, what are the sorts of things they need to think of when it comes to My Health Record? What about genetic information?
54:45 - Kim, what's the status of the genetic genomic information issue in MHR?
55:40 - The road to hell is paved with good intentions. What we will see is creep.
Some people have suggested that say, "Women who live with chronic pain or have a history of anxiety should opt out as they risk their diagnosis being used as a reason to not investigate something further." How is the medical profession dealing with that sort of issue where anxiety on your record might mean the doctor would say, "Oh, I won't go down that track?"
 

 

Webinar 2: Overview of Digital Health

 

Use these links to jump to different sections of this page:

My Health Record is just one piece of the digital health landscape in Australia. To properly understand My Health Record, it is important to know where it fits in the big picture.

In this webinar, we discuss among other topics how My Health Record currently and could in the future interact with the rest of the Australian health system, the safety and quality impacts of digital health, and what else is happening in digital health.

"As a patient in a hospital that had paper and going across many different departments, I was always pleased to see the file arrive. I didn't realize at one point that it didn't have a summary page and that I was actually now the source of truth for my own care, which frightened me quite a lot."
- Christine Slade, Consumer Advocate

See her full answer at 13:00

"I'm trying to take care of someone with a complex manic depressive bipolar illness. Has a bit in a hospital. Patient was taken care of yesterday. She got immune data in one hospital. She got medication data in another hospital. She doesn't know herself what all the answers to all those questions are, some as unreported, I'm traveling. I'm supposed to be making decisions about medications descriptions now using a 19th century system."
- Dr Ian Hickie, Co-Director of the Brain and Mind Centre at the University of Sydney

See his full answer at 11:00

 

Details

Date and Time: 3pm AEST, 23 August 2018
Recording youtu.be/jBHkHqlQvhI/
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_2.pdf

Panellists

  • Garth McDonald, General Manager of Service Delivery, ADHA
  • Dr Christine Slade, Consumer Advocate
  • Dr Ian Hickie, Co-Director of the Brain and Mind Centre at the University of Sydney

 

Resources

My Health Record is just one piece of the digital health landscape in Australia. To properly understand My Health Record, it is important to know where it fits in the bigger picture. The ADHA's Framework for Action (link is external) - the implementation plan of Australia's National Digital Health Strategy - has 7 areas of focus. My Health Record is one, as are;

  • Secure Messaging - safely sending messages between health professionals and consumers
  • Interoperability - standards to ensure different health software can talk to each other, and
  • Medicines safety - providing better access to prescriptions and medicine info, among others.

You may also be interested in:

Timestamped Q&A

3:50 - To kick off, I'd like to ask each of our panelists to give a brief overview of how they see the My Health Record and the implications
5:50 - Many people will be saying, "What is the difference between health and digital health?" What's your view on that?
6:45 - Will the term digital health still be used in 5 years?
7:20 - Ian, whats your view on integrated care and MHR?
9:45 - This all sounds ideal, Garth, but is it practical or possible with a national, highly technological regulated system like we have in health?
11:00 - How would you describe the state of health data in Australia at the moment?
15:45 - What can we learn from digital health systems overseas?
19:40 - We say we're empowering the patient, but will a lot of the people seeing the amount of data that the system can collect and be held by providers or whatever will be nervous about this, do you think, or not? 21:00 - Does something like MHR help integrated, coordinated, patient centred care?
24:00 - Could we get to a state with My Health Record where we can tap our card when we go to see the doctor or whatever and that's going to immediately tell the doctor the latest
28:30 - This person seems to be raising the question that maybe the clinician may not record everything the patient wants even where it may be wanted. To what extent can the patient say "No, I want you to put that down."?
32:50 - What can you tell us about the impact and influence of My Health Record in mental health care?
34:15 - What sort of safeguards do you have in the system to protect confidentiality where it needs to be particularly in the small sensitive and complex area of mental health for instance?
35:45 - Christine, what's your sense of the evolution, particularly the confidentiality safeguards? Do you have a feeling that for your experience things are evolving, or likely to evolve?
39:40 - How would you enhance My Health Record?
41:20 - Is there an issue with the type of digital care we want and how Medicare funds doctors?
44:15 - Are there concerns that all the new health and wellness apps are loading too much onto the patient, and is this a wider concern with digital health?
46:25 - Does digital health raise new, fresh, different challenges in terms of safety and quality?
49:20 - Is there a tension between making MHR useful for patients, and making MHR useful for providers?
50:15 - What about the 'uberisation' of health care? As we move faster, does the risk increase?
54:00 - We had a question, how will the quality of data inputs be ensured?
57:30 - Final points

 

Webinar 3: Benefits of My Health Record

 

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A My Health Record system with the majority of Australians enrolled has many potential benefits for the health system in Australia.

In this webinar, we discuss among other topics the benefits to the individual, the benefits to the health system, the barriers to realising benefits and what work is underway to measure benefits. This will include a discussion of some of the risks and limits, however the risks will be looked at in greater detail in following webinars.

 

Details

Recording: youtube.com/watch?v=xdOpbG8ZJo8 (link is external)
Transcript:chf.org.au/sites/default/files/transcript_-_webinar_3.pdf

Panellists

  • Dr Amandeep Hansra – GP, ADHA Clinical Reference Lead, former CEO & Medical Director of Telstra’s telemedicine business, ReadyCare
  • Russell McGowan – Consumer Advocate
  • Dr Chris Pearce - GP, Academic, President of Australasian College of Health Informatics
  • Dr Chris Freeman - Pharmacist, Vice president Pharmaceutical Society of Australia

 

 

Resources

Timestamped Q&A

2:12 - So let's start by asking each of our panel members how they see the main benefits of MHR
5:51 - Dr Chris Pearce, perhaps you can talk about, from the clinical point of view, how important is the sort of connection of information that Russell was just describing, having it in one place?
7:01 - And Chris Freedman, from the pharmacists' point of view, in general terms, what would you see as the benefits?
8:30 - I'm sure you often hear, "Well, I had a test done at the hospital some time ago," or some other place, "Don't you already have that information?". People are so used to info being available, how do you explain the challenge in health?
11:03 - Russell, you're an early adopter and early user of the MHR, have you seen much in the way of advances in what it's able to offer since you signed on?
12:52 - Chris Pearce, we've got the perspective of somebody with a chronic condition. What are the benefits for, I guess, the majority of the people who don't have a chronic condition?
13:55 - What about healthy young adults?
14:40 - What are the sort of things that MHR can help with pharmacists in terms of their patients or the customers?
16:26 - Discussion about the benefits of MHR for coordinated, integrated care
18:31 - Chris Pearce, do you think doctors as a rule are seeing all the benefits?
20:33 - How much do you think the My Health Record will change healthcare, say, in five to ten years? Do you have a sense that, are we on the edge of a revolution or is it going to be a sort of a more incremental type of process?
22:58 - Do you see this in the so-called meta data that's going to become available as a big long-term potential benefit to the way population health can be improved?
28:22 - Is one of the benefits going to be to bring the various health professions closer together because they're relying on the same sort of database, which all can see at the same time. Is this likely?
31:30 - Amandeep,you may not have been directly involved but I wondered if you've got any perspectives on the likely outcomes of ADHA benefits measurement projects?
34:53 - Chris Pearce, how do you see, say, in five years time, the relationship, say, of the general practitioner and the patient being changed? Will the GPs be spending more or less time with patients? Will the GP be able to reach a course of treatment quicker?
36:28 - Russell, do you think you've got more control of your healthcare?
38:28 - Is there an argument for the notes or the records that will be available under the My Health Record for some sort of note as to why a test or investigation was not ordered, do you think, Amandeep? 40:48 - Do you think the MHR is going to promote or stifle innovation? You mentioned apps before. Do you think we're likely to see more of these being made more used or accessible as a result of MHR?
45:22 - Would you say that having more information, say a better insight on say knee surgery, that the doctor can immediately present to the patient, would that make a difference in terms of outcomes?
46:08 - Do you think that public at large has been given enough information about the benefits to them of better, sharper information about their healthcare that's available through MHR?
50:00 - Chris you have said before that one of the major challenges is the lack of a clear structure devoted to clinical safety. Do you think that's changed recently? Is the MHR going to help this?
51:00 - Chris Freeman, the importance of accuracy of course is vital with medication. Do you see the MHR having a very significant impact in terms of dispensing of correct drugs, that sort of thing?
52:35 - Russell, do you think the average consumer is aware of the benefits of MHR?
53:36 - Do you think the medical professional profession is sufficiently well informed on the MHR?
55:00 - Is there a need for more incentives for the professional to get on board? Do you think that the technological change is pushing us inevitably towards a different sort of health funding system?
59:52 - Final points

Webinar 4: Risks of My Health Record

 

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Understanding the risks of My Health Record as they apply to your own life is a vital step when deciding about whether to have a My Health Record or not.

In this webinar, we discuss among other topics the risks to privacy and security, the risk to community perceptions of the intersection between the health system and government, and what measures are in place to manage and mitigate these risks. This included a discussion of some of the benefits, however the benefits will be looked at in greater detail in a previous webinar.

 

Details

Date and Time: 12:30pm AEST, 6 September 2018
Recording: https://youtu.be/M59yAJt_njM
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_4.pdf

Panellists

  • Tony Kitzelmann – ADHA Chief Information Security Officer and General Manager for the ADHA Cyber Security Centre
  • Dean Martin – Consumer Advocate, ADHA Consumer Advisory Committee member, Research Manager at Black Dog Institute
  • David Hansen – CEO of the Australian e-Health Research Centre, Chair of the Health Informatics Society of Australia board
  • Aaron Cogle – Executive Director, National Association of People with HIV Australia

 

Resources

Timestamped Q&A

Let's start by asking each of our panellists what they see as the major risks with MHR
3:35 - Tony Kitzelmann
5:12 - David Hansen
7:31 - Dean Martin
8:19 – Aaron Cogle
10:00 - Tthere's a matter of risk and who owns it. Do you think, is there a place for private industry, the private sector to be involved in the data collection or storage, or should we only leave it to governments?
15:50 - Is it the case that the developments are likely to leave us in 10, 20 years with some entirely different technology or way of storing and distributing our health information?
17:18 - So have we got clear principles that endure and still protect us as we get this changing technology?
19:02 - Will the service hosting data be located physically within Australian mainland borders?
19:48 - Do you think there's enough being done to inform people as to why or when they should sit security and access controls to the MHR?
22:15 - What's your view? Is it going to be easy for the average consumer to set things up to suit their needs?
24:57 – Should having a pin on your MHR be the default for everyone?
26:12 - You hear these stories of up to 900,000 health care professionals, nurses, physios, whoever, being able to access your data. What do you say to that?
27:45 - Do you have to deal very often with attempts by people to hack into the health information? Are you aware of it? Do you have to deal with attempted intrusions like that?
29:30 - And how does our system compare and contrast with these other systems overseas? Are there different features in terms of security?
30:45 - David, what's your response to what Tony's just said? Are you convinced that everything's watertight?
31:59 - Dean, from a consumer perspective, are you reassured by what you've heard?
32:26 – Aaron?
34:32 – Who is responsible for making sure people know about the benefits and risks of My Health Record?
35:38 - How easy will it be for an acquaintance of a person motivated by curiosity and working as a health professional in hospital to gain access to a person's health record?
39:24 - Aaron, from the perspective of your group, are you persuaded that the health professionals can, by and large, be trusted to deal properly with the My Health Record data they see?
40:52 – Has compensating people who have been harmed in this way been considered at all?
41:50 - We've seen the government is moving to introduce amendments to the MHR legislation to tighten up on privacy and security of records. Do you think that will solve the outstanding issues in terms of privacy and security for MHR?
47:28 - Do you think the healthcare professionals, not only doctors but other allied healthcare people, nurses et cetera, do you think enough has been done to educate and train them to make the most of MHR?
49:23 - We've had a question from Melissa, who asks what does a person in a domestic violence situation need to consider before making a decision concerning a My Health Record?
50:41 - What about the children of a parent who's affected in domestic violence?
51:45 - How is My Health Record any different to similar systems in the UK and Singapore which have experienced nasty security breaches? Isn't MHR just as vulnerable?
52:51 - Jane asks, I've had a My Health Record for the last few months. I have been to the doctor's many times since, but I have no records displaying, which means the doctors are not uploading. Why do people have to ask their doctors to upload?
55:38 - Dean, do you get the impression that typically people as they become more aware of My Health Record, are going to be perhaps more assertive, wanting more information available on their record?
56:30 - Would that be your view Aaron? Do you think from the people you're representing, wanting their doctors to put up the information?

Webinar 5: Digital Inclusion, Health Literacy and My Health Record

 

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To be able to effectively use My Health Record, a person must have a sufficient level of digital, data and health literacy. They also need to be able to access digital tools. Making a decision about whether or not you should have a My Health Record requires a person to make an assessment of their digital and health literacy, but it also raises important ethical questions about the merits of an opt-out model for the whole population.

In this webinar, we discuss among other topics what skills are required to use My Health Record, the level of digital inclusion in Australia and discuss the ethics of the decision to opting people with low digital or health literacy into the My Health Record system.

 

Details

Date and Time: 3pm-4pm AEST, 13 September 2018
Recording: youtu.be/B-9Z7KpQqW0
Transcript chf.org.au/sites/default/files/transcript_-_webinar_5.pdf

Panellists

  • Karen Gallagher, ADHA, General Manager – Implementation, My Health Record
  • Dr Chris Moy, GP, Chair of the AMA Ethics and Medicolegal Committee
  • Louisa Walsh, Consumer Advocate, Researcher at La Trobe’s Centre for Health Communication and Participation
  • Mohammad Al-Khafaji, FECCA, Director – Strategy and Engagement

 

Resources

"As My Health Record becomes more interactive, as it becomes more person controlled and person centered, then there's this increased need to address the barriers of digital and health literacy."
- Louisa Walsh, Consumer Advocate and Researcher at La Trobe’s Centre for Health Communication and Participation

See her full answer at 23:31

"Information availability is really key to literacy. My Health Record is a big change and a big shift in people being able to be more involved in their care or for their carers or their family to be involved in their care because they've got information about themselves."
- Karen Gallagher, ADHA, General Manager – Implementation, My Health Record

See her full answer at 5:39

Timestamped Q&A

3:06 - we think the typical patient and particularly those with little digital skill would get much support from health professionals, doctors, nurses, et cetera, to encourage them to use MHR to best advantage?
3:33 - Chris, what's your view?
5:39 - What's the perspective of the ADHA on this, Karen? Where do we go in terms of reaching out to people who may not be technically knowledgeable?
8:50 - Louisa, what's the perspective, do you think, from the consumers? I mean, is this sounding like the way to go?
11:51 - Mohammad, digital inclusion, is this a more difficult challenge for people from non-English speaking backgrounds? What do you think the experience has been so far in terms of accessing My Health Record?
14:50 - Aren’t there going to be a lot of people who don't read or speak English? What's going to happen about their access to MHR?
15:58 - Chris, could I ask you, has the medical profession looked at any risks from digital exclusion with electronic health records, there may be those who aren't digitally equipped who are going to be left behind? Is this an issue, do you think?
20:30 - Mohammad, is that point coming through to your communities that in fact for people who don't speak English, this may be a plus in that an MHR is available if they end up in the hospital or at some other place?
23:31 - What do you think, Louisa? You've looked into this, personally and as a health communication researcher.
29:48 - Karen, can we expect to see the continued developments that meet some of the issues that Louisa raises?
34:35 - Do each of you want to just give a quick idea of how you think health literacy will be affected with the rollout of MHR? Perhaps, I should start with the consumer. Louisa.
36:37 - Mohammad, do you think the My Health Record will help with health literacy and people learning more about healthcare how best to keep good health, et cetera?
38:07 - "The discussion's all about the use of the consumer portal as a tool and how it's not so easy to navigate. Third-party apps can provide a more user-friendly experience for people. What's happening in this space?"
41:10 - Do you think, Karen, that people, have the health literacy as a rule to make the best judgment on whether or not to stay with My Health Record?
46:09 -Louisa, any idea of just how many or what proportion of the population has a clear idea about risks as against benefits of My Health Record?
49:30 - Chris, what are the medical profession doing about MHR, how well are they understanding it?
52:38 - Karen, can I ask is the My Health Record administration relying just on rising critical mass? Say, if we take the hospital specialists' involvement, is there anything ADHA doing to drive that?
56:55 - One of the big ongoing claims made in support of MHR is that it should bring more knowledge and information towards the consumer Does this have the potential to, if you like, equal up the power imbalance at all?
1:00:33 – Last Words

Webinar 6: Consumer Estimates

 

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The final webinar of the series was an opportunity to summarise what has been covered, and put any remaining questions people had about My Health Record directly to representatives of the Federal Government.

In this webinar, a panel of health consumer advocates asked questions of a panel of representatives from the Federal Government, in a style similar to Senate Estimates. The consumer panellists also shared their thoughts and experiences with My Health Record.

 

Details

Date and Time: 2pm-3:30pm AEDT, 17 October 2018
Recording: youtu.be/Ttz3eWx6BMU
Transcript: chf.org.au/sites/default/files/transcript_-_webinar_6.pdf

Panellists

Representatives from Government:

  • Karen Gallagher, ADHA, General Manager – Implementation, My Health Record
  • Kim Webber - General Manager, Strategy at the Australian Digital Health Agency
  • Michael Frost, AIHW - Group Head, Primary Health Care and Veterans Group

Consumer Panellists:

  • Paige Burton - Consumer, 2017 Australian Youth Representative to the United Nations
  • Sharon Tonkin - Consumer and carer with 40+ years of rural health experience
  • Marc Niemes - Consumer, Digital and eLearning business founder, "Health is not something done to you, it is something you take part in"

 

Resources

Timestamped Q&A

The person who asked the question is named in brackets.

3:08 - (Jo) We might start off by asking each of the consumers can you take a couple of minutes to tell us what your current attitude towards My Health Record?
3:32 – Marc
5:24 – Sharon
7:50 – Paige
10:03 – (Jo) Government reps, did you want to respond at all to anything that's said or can you outline what the role of the agency is in My Health Record?
10:24 – Kim
11:21 – Karen
13:17 – Michael
14:55 - (Jo) What would you say to people who are saying that a lot of the marketing, a lot of the emphasis has been on health professionals rather than the consumers who it's supposed to help?
18:15 – (Marc) Is MHR data being used to do more to move healthcare into basically preventative healthcare?
20:25 – (Sharon) How do we ensure that an e-conversation doesn’t just happen between medicos, leaving the consumer out?
22:43 – (Marc) What level of security do we have as consumers the data has been taken care of, and if that does get out in some way, what can we do?
27:14 – (Marc) Can the SMS notifications about access go to the designated carer?
28:06 – (Paige) Why send that text message after someone accessed the record and not before?
31:00 – (Paige) There's no, as I'm aware, incentive for GPs, medical practitioners, to take extensive notes, and that the system relies on that. How are we going to make sure that people are taking notes in a way that is clear, that allows for nuance, and when someone else looks at that record they can say, "Actually, I know what was happening here"?
34:17 – (Marc) Does the GP see it as an admin layer, or an actual benefit?
35:50 – (Sharon) Until 12 months ago, we had five GP practices in five towns. There was two IT systems, that didn't talk to one another. We're holding our breath, "Will they talk to My Health Record?"
37:10 – (Marc) Why not just use a digital wallet to hold the record, or a token, or something of that nature?
41:38 – (Jo) That was one of the questions that came through to us online. "How will people access their health record, if they're unable to access through myGov?"
44:23 -(Jo) On secondary use of data, Michael, can you tell us about who can access data and for what purposes? 47:46 – (Jo) So what checks and balances are there? Somebody says how they’re going to use the use the de-identified data. Then they use it for a different purpose. What happens then?
48:32 – (Jo) What's the process for de-identifying data?
50:09 – (Marc) Is it too simplistic to say if you are receiving the public benefit of a medical service, then you should, by rights, because you're in the health system, be willing to basically give them your de-identified data, anyway?
55:49 – (Paige) I think it's pretty flippant the way we're talking about, "Oh, people haven't been educated about it," or whatever. It's not an abstract thought, when we think about this data going to people. It does happen; it has happened.
1:00:49 – (Sharon) I was wondering how we're going to protect the concept of informed consent?
1:04:23 – (Sharon) How are we going to teach the population how to use it?
1:08:40 – (Paige) What kind of assurances are there for the privacy of young teenagers, and what happens when someone turns 18?
1:14:00 – (Paige) Are there instances where people will have to have a record to access certain kinds of health care or trials?
1:16:38 - (Jo) A question from Rosemary; "My GP's not currently set up for MHR, and he's reluctant to get involved, what rights do I have as a consumer? How can I insist?"
1:18:30 – (Jo) What are you doing with specialists to get them on board?
1:21:15 – Closing remarks from consumer panellists
1:25:00 – Closing remarks from government panellists