Tag: My Health Record

Digital Health Series – Interoperability

Posted on August 13, 2024

At the time of this post, WA Health has been funded for the next three years to write the specifications and choose a vendor to develop an Electronic Medical Record, or EMR. This will be a statewide EMR for WA Health’s public hospitals and health services. From January to June 2024 HCC has been working with our EMR Consumer Reference Group to up-skill ourselves on all things digital, so we are able to provide the consumer voice into this part of the process. In March 2024 we convened a webinar entitled Can the EMR stitch up our health system? This blog has links to the replay, transcripts and summary and provides insights into what consumers need to think about. Consumer involvement in WA’s EMR is being funded by WA Health to ensure a strong consumer voice. WA has been leading the nation in the level of consumer involvement in this important initiative.

This blog series has been written by Pip Brennan who is working for HCC on the project, co-located in the Health Department.

Interoperability is just a fancy word for your health information following you, from GP to hospital, allied provider to pharmacist to specialist and back again. In 2021, HCC co-designed an Electronic Medical Record Consumer Charter which has this to say about interoperability:

  • Accuracy: My health records are complete, accurate and up to date.
  • Equitable care: My health records are available to my treating clinicians regardless of where I am being treated.
  • Transparency, Choice and Control:  I have access to my real-time health information at no cost to me or my family.

I’m just pausing for a moment to remind people of the difference between an Electronic Medical Record and My Health Record. The dot points from the Charter above refer to WA’s future Electronic Medical Record. The Electronic Medical Record and My Health Record are different as per the image below. An Electronic Medical Record is based within a hospital or health service. My Health Record contains federally based information such as GP care and immunisation records. We want the two to talk to each other. That is interoperability.

Image highlighting the difference between My Health Record (federal, GP and scripts etc) and Electronic Medical Record (state-based, everything that happens within the hospital walls

Australia is doing a significant amount of work on interoperability at a national level. We now have a National Healthcare Interoperability Plan, and this potentially offers WA an opportunity to have a more joined-up EMR than other states and territories who developed their EMRs prior to this policy coming into being.

There’s a change in the air that as if to say everyone recognises that we have an opportunity, probably a once in not just a single generation, but multi generation opportunity to fundamentally transform the way our health system works

Harry Iles Mann

Webinar – Can an EMR stitch up our health system?

Because of all the work happening nationally, we invited National Consumer Leader and Digital Health Expert Harry Iles Mann to talk with WA’s Chief Clinical Information Officer Dr Peter Sprivulis about WA’s Electronic Medical Record and how that could connect up our health care.

You can read the whole transcript, or highlights here, or watch the whole replay here.

Key messages about interoperability:

  • It’s all about culture. The technology is the easy bit. It’s the culture that is the difficult aspect to digital health transformation.
  • Get workflows right. Ensure that the words mean the same on each side of the transaction – that GPs and hospital staff mean the same thing. e.g. allergies.
  • Legal and regulatory levels. There is potential for the My Health Record Act to be broadened to become My Health Information Act. This will provide a safety for health consumers, and puts very clear obligations on health services to share data appropriately. This is a long term reform.
  • Financial and cultural piece – we need to deal with perverse incentives to make the right thing the easy thing for clinicians. For example, currently if a GP speaks to a specialist about a patient, neither is compensated, even though this could expedite care for a patient and avoid unnecessary, inconvenient, costly consultations. There needs to be a joined-up conversation with private, public, state and federal health to sort this out.
  • My Health Record is still key – There is ongoing investment in the My Health Record as a platform to facilitate interoperability and consumer access to their information. Yes, My Health Record has its issues – but a key reason for the ongoing investment is that regardless of what states and territories or different vendors do in developing EMRs, there will be something that is sitting within the custodianship of government that is a point of access for you and your health information.
  • We’ve made a start – WA has digitised parts of the Electronic Medical Records in WA’s hospitals, but this will see us take a bit leap forward. An EMR is all about the bedside workflows – this is where all the risk sits.
  • Patient portals can really assist with ensuring you have access to your EMR health information and can participate more actively in your own care.
  • The OpenNotes approach might be possible through WA’s EMR Project. (Google it. It’s very exciting!) This is quite aspirational though and may not be on the table, depending which vendor is chosen. OpenNotes will help clinicians think carefully about what they write about people, and will support the accuracy of information.

Importance of EMR Consumer Involvement

There are three levels of consumer input into training clinicians, and driving culture change:

1. Telling stories about what’s working, and what isn’t – this is effective with policy makers. Consumer stories are much more effective than clinicians providing feedback about what isn’t working for them as clinicians. Consumer stories can drive digital investment.

2. Co-designing solutions – so that the workflows centre around the patient, not the clinician. Information isn’t captured and shared for free. It always takes time and resources to share data.

3. Change management initiatives need consumers present, to make sure the tools are used in the way that helps consumers. Harry’s example of the test results not being available in the ED – it’s likely there is a portal that would allow the clinician access, but they don’t know how to use it. Consumers need to provide motivation for busy clinical staff to learn how to use the packages effectively.

Being a Digital Health Consumer/ Carer Rep:

  • You know more about digital health than you think you know.
  • You don’t need to understand every last technical detail – it’s important to ask naïve questions. This can prompt important critical thinking in digital health project.
  • There are no stupid questions – sharing your experience is more valuable than learning “geek language”  “Insist on answers in plain English. If the geeks can’t explain to you what they’re trying to do in plain English, then then you’ve probably got a program that’s not really set up for success anyway.”
  • We need to think of ourselves as allies with clinicians for change, working collaboratively together. “we’re not two different actors, trying to find common ground from across the chasm, we’re actually allies working towards a common goal.”

Feeling the need to geek out? All the federal initiatives for you to google are listed below:

There’s a change in the air that as if to say everyone recognises that we have an opportunity, probably a once in not just a single generation, but multi generation opportunity to fundamentally transform the way our health system works

Harry Iles Mann

Want to stay in touch with the project? Just fill in The EMR Consumer Network form or email p.brennan@hconc.org.au

Health consumers’ feedback on digital health “Future for healthcare in Australia…” workshop

Posted on October 13, 2022

 

HCC’s Consumer representatives give feedback on ACHSM pre-congress workshop

Over 100 ppl — mostly health service providers — but certainly including at least 12 HCC consumer representatives, attended a pre-ACHSM* congress workshop, “The future of healthcare in Australia: designed for consumers, enabled by digital, and accessible for all” held at Perth Convention and Exhibition Centre 21-23 September 2022. Following the event, we asked our HCC consumer representatives who attend the pre-congress workshop for feedback. Read further to find out what they said.

* 2022 Australasian College of Health Service Management – ACHSM, held at Perth Convention and Exhibition Centre 21-23 September 2022.

The session was entitled “Future for healthcare in Australia: designed for consumers enabled by digital access for all’. The main presentation gave an overview of the Deloitte, Curtin Uni and CHF white paper entitled ‘Australia’s health reimagined. The journey to a connected and confident consumer.” 

Noted by one consumer: the very title of the session …designed FOR, not designed WITH!

In this white paper it shows where the opinions of stakeholders lie about where the health system currently sits, as well as priorities for change.

The three “horizons” – ‘connected’, ‘empowered’ and ‘confident’ consumers – are envisaged to exist as a progressive step approach to a reimagined health system which ‘supports all Australians to live their best, healthiest lives.’ The white paper describes a number of transitions that will reorientate the health system to focus on the needs of individuals.

Following the review of this report’s findings, the audience was asked to participate in a series of Menti polls (Mentimeter is an online, interactive, live polling tool used to ask questions at events, and provides the audience’s responses on screen). Polling activities looked at views on the current state of healthcare and its use of digital health in terms of three horizons, connected, empowered and confident consumers.

Overall, many of our consumers suspected that that the room was not very consumer focused in its perspective.

One consumer said that when voting on priority focusses, the important dimensions to focus on that will accelerate the health system toward achieving its visions (e.g., consumers moving along the “horizon” from “connected” through to “empowered”), the dimensions relating to consumers came in as priorities 5, 8, 12 and 13. Priorities 1-4 were system funding, system integration, enabler workforce, and enabler data interoperability.

The priority responses from the room were all about the providers and the system doing things to reform itself – not starting from where consumers are and what they need.

There was a lot of academic and high-level commercial ‘report’ jargon thrown around the room, said another consumer, which is not very consumer-friendly regarding simple language or a ‘give it to me straight, doc’ approach.

One of our consumer representatives said he was “very surprised that the title suggested workshop for consumers but [that consumers] were very outnumbered by others [e.g., health service providers]”.

However, more than a couple HCC consumer representatives found the workshop to be positive and most worthwhile with a good spread of consumers in the room and plenty of opportunity to get the consumer perspective heard and captured, especially using Menti. A couple consumers mentioned Menti being useful:

“…the electronic way [using Menti] of gathering comments, opinions and insights (via phones) is an efficient way of conducting the workshop, especially when only 1.5 hours is allocated.”

The strong consumer feedback will help shape the next phase of the work.

Of interest, the point was made that health providers and clinicians are also service users and so they should look at what they would want to receive for themselves and their loved ones.

Another consumer seconded that point of view, saying “A moot point was that we are all consumers at one time or other.”

It is worth highlighting concerns of another health consumer in attendance:

“… about the comments made [regarding] ‘we are all consumers of health services’ by the group. I think it is really important for not only health service providers but also health workers and those in leadership positions across the system, to understand that being a consumer of health services means different things for different people. While I agree that we all should receive the same access to digital health tools, there needs to be a recognition of the complexity of need for consumers with complex health issues compared to those who perhaps step in and out of the health system periodically throughout their lives – and digital solutions need to address this and respond to it. People with chronic health conditions…often have contact with the health system on a weekly basis and require a more intensive, complex, and sophisticated relationship with the system, to meet their needs. I don’t believe this level of complexity is necessarily understood or appreciated by people who don’t have lived experience of chronic disease and multiple comorbidities. I think to say, ‘we are all consumers of health services’ is being blind to the varied complexities of consumer experiences and it is essential to have people living with complex chronic disease who are reliant on the health system constantly, in leadership positions in health, to ensure this is understood and provided for in digital health strategy.”

Some pointed out that if the health system did not hurry up and adopt more digital health resources then digital disruption would mean consumers met their needs elsewhere as private companies enter the field and websites such as https://www.patientslikeme.com/ are set up.

(This was echoed by another consumer who attended an event in August 2022 – read the blog here: “A wild reflection from digital health summit”.)

More quotes, and feedback:

There have been many similar strategies in the past and many of our consumers remain unconvinced that we need another one at this point. For example, many of our people specifically mentioned the National Australian Digital Health Strategy and that it involved “extensive community consultation across the country”.

…it is frustrating to see a restart, rather than building on what has been done previously.

I fear that there are many efforts to improve the health provision in the community but is it still being addressed in silos.

I would love to see a co-design committee developed to move ahead with what priorities can be worked on in this space.

There is no “one size fits all” and there are many things that need to be improved within WA Health. How can we move forward with realistic and achievable outcomes is my question?

As an aside – one health consumer recommends the 2017 Documentary “Daughters of Destiny” on Netflix and is convinced that starting health literacy awareness in early education is absolutely necessary.

[Noteworthy: October is Health Literacy Month.]

One consumer noted that “we [the attending workshop participants] were not told how the survey of approximately 1,800 people was administered nor the characteristics of the respondents.” She said, “This raises concerns about representativeness and possible bias if it was largely administered digitally as this may result in an overstatement of willingness and desire to adopt digital health resources.”
(~ Since the session she discovered it was indeed an online survey)

“A central focus on health outcomes was not explicit and evident in the presentation, and that is always a concern,” one consumer shared. “It must be the starting and end point, with the strategy articulating a pathway for delivering improvement.

Digital health is not a silver bullet and cannot be considered in isolation of the “health” ecosystem – it is an enabler along with other interdependent components that must be represented as part of a holistic solution that brings in a stronger community role and emphasis on consumer responsibility.”

“We all need the reassurance that there will be benefits of an integrated system that it is sustainable, workable, and where all [are] included [with] no one left behind…

Our regional services need aligning around Australia. Our Indigenous communities need appropriate consultation. Multicultural people need accessible info. Gender diverse, neuro divergent, and multiplicity of broad users need to be recognised and accepted as service users with their own often co existing diversity and needs. We know mental health concerns have also risen throughout Australia over past three years, not to mention our ageing population with continuing and varying need.

[Noteworthy: October is World Mental Health Month.]

If we are not delivering appropriate health care now to those in need, how do we expect anything new to be accepted, or are we going to have to supplement upcoming changes with the loss of something already existing?”

Overall, although with mixed levels, HCC consumer representatives thought the white paper is a useful contribution. However, there are several concerns that “not enough attention is paid to the digital divide either in the report or the workshop and there is a real danger it will gloss over the difficulties of access for some and rather than delivering something that is person-focused. It will assume that all consumers want and are able to access digital health and therefore replicate existing inequalities rather than break them down.”

 

***

Follow our social media platforms for ongoing commentary and contributions from our consumer representatives and the HCC team.

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

Posted on August 23, 2018

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 Opt Out Period

Posted on May 25, 2018

You have from 16th July until 16th October to opt out…


Did you know that by the end of 2018, an online summary of your health information “My Health Record” will be created for every Australian?

If you don’t want to have a My Health Record, you need to take action by 15th October and opt out.

There are a range of ways to support you to opt out, and these will come on line by 16th July. You can sign up on this web page for updates as they are released.

Why have a My Health Record?

In simple terms, a My Health Record connects the dots between, for example, your GP and your hospital care. Over the last several years, WA Health services have been working on linking your hospital discharge summary to a My Health Record. So when your discharge summary is created, it looks for a match with a My Health Record and if there one, it will connect the two. Your GP will then be able to see the discharge summary, and so will you. Getting a My Health Record will mean important information like this will be at your fingertips 24/7. This will result in faster and safer care for you and your family.

Do you have any allergies???

Patients often wonder why they have to keep repeating tests and explaining allergies over and over again. but currently, we have on way of easily sharing that information across our systems. A My Health Record will help with this.

Across Australia

Having a My Health Record will mean your important patient information follows you no matter where you travel in Australia.

Advanced Care Plan

You can also upload your Advanced Care Plan if you have one, on your My Health Record.

Whose records?

In our Advocacy service we often encounter people needing assistance in accessing their medical records. This will, over time, be a thing of the past, where people can maintain control over their own health information via the My Health Record. This is vital when seeking follow-up treatment, understanding our own health care and knowing what has happened to us.

What about privacy?

This is a huge consideration, and many will know that the My Health Record, which used to be called the Personally Controlled Electronic Health Record, has been in the planning stages for many years, in part because of the important considerations of protecting privacy. If you are really concerned, you can opt out.

Extra privacy protections

One of the new features of the My Health Record will be the ability to set it up so that you get a text if someone accesses your health record. This is not something our current paper based medical records provide. You will also be able to control certain aspects of it yourself.

To find out more please ensure you, your family and friends go to the government website for information and updates.

My Health Record. Your Say.

Posted on January 12, 2017

my-health-record-sign-up

In May of 2015, Australia’s flagging electronic health record received a much-needed resuscitation by then Federal Health Minister Sussan Ley (let’s not go there!)

Since that time, the new Australian Digital Health Agency has been created, opening its doors on 1st July 2016. A new Chief Executive Officer, Tim Kelsey was appointed.

One of the key problems with the first version of Australia’s digital health record was the fact that we needed to opt-in, to take the decision to sign up for one. Overwhelmingly, we didn’t. In fact, only 10% of Australians ever did.

Since My Health Record’s rebirth, there has been a trial in Western Sydney and Northern Queensland for an opt-out trial. This means you need to make the decision to un-register. Overwhelmingly, people didn’t. 98% of people on the trial didn’t, while 2% of people did. Since that trial, the number of Australians with a My Health Record has increased from 10% to 18%. In people terms, currently 4.3 million Australians have a My Health Record.

And? So?

You may have experienced that disconnect between your GP or community health care provider and hospital. In part this is because hospitals are funded by our state governments while GPs and community care providers are funded federally. It makes for a massive data divide which we continue to bump up against. My Health Record is the missing link between the two systems and can provide a better integrated, safer health system. And you can always opt out if it is not something you want to be part of. AND you can also put notes into the My Health Record too. Sure, it’s early days, and I have had one for some time now with a bit of data but not a whole lot. Over time though, there is going to be a tipping point, and My Health Record will be populated with enough data to ensure it will become an invaluable tool for a more connected, safer health system.

What do you think? Fill in the survey…

On 3rd November 2016, the Australian Digital Health Agency launched their consultation. The consultation includes an online survey which closes on 31st January 2017.

Make sure you have your say!

Pip Brennan, Executive Director.