Tag: Digital Health

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

Digital Health Series – Patient Portals

Posted on June 14, 2024

By Pip Brennan, Electronic Medical Record Consumer Reference Group Convenor

The Health Consumers’ Council was funded by the WA Health Electronic Medical Record (EMR) Program to convene three consumer webinars and four Consumer Reference Group meetings between January and June 2024. The purpose of this work is to build on the EMR Consumer Charter that was co-designed developed in 2021.

In this interim period prior to developing a tender for a statewide EMR, HCC aims to upskill a group of supported, networked consumers and empower us to deliberate on key aspects of the EMR. We have also created several videos on key topics. We are sharing the learnings from this work as widely as we can, as WA continues its progress towards obtaining EMR in around three years’ time.

Patient Portals – what do consumers need to know?

The Patient Portal is the part of an Electronic Medical Record that we can see and interact with.

It was the focus of the EMR Consumer Reference Group meeting in February 2024. Prior to the meeting, a list of patient portal resources were provided for the Group to look at:

At the meeting, we interviewed Liz Cashill and Consumer Representative Mary Oti from Royal Melbourne Hospital. They began implementing their patient portal in their EMR in 2020 and share key insights about what a patient portal is, how it works in practice, and what we need to think about as consumer representatives. You can watch the video replay below or read the transcript here.

WA’s Consumer priorities for a Patient Portal

After the presentation, the EMR Consumer Reference Group discussed our priorities for the future WA Health EMR Patient Portal. This is a summary which was provided to the WA Health EMR Program:

Consumer involvement: Consumers are partners throughout all stages of scoping, procurement, development and rollout of a patient portal.

Consumer centred: Base the design around us as consumers, as we move all across the system and want to be able to use one entry point for all our care. It must integrate and connect with adjunct and related systems; it needs to work in harmony with My Health Record. A priority for consumer centred care includes recording of preferred pronouns, name etc as part of the patient portal.

Consumer empowerment: The portal must support partnering with our health care team to achieve the best possible health outcomes. Specifically this includes two-way communication with an ability to view,  edit, download and print information about us. We need to be linked to knowledge and resources to navigate our care journey, with easy and intuitive navigation features.

Transparency, Choice and Control: this would look like there being controls for sharing of information need to be in place as they are for My Health Record, and understanding

Equity of access: we need to be supported to use the patient portal if we wish, but to receive the same standard of care if we don’t choose to use it. We would also like to see system flags to support equitable care,. e.g. when someone is travelling from the country. Other examples include a flag if there is a Disability Care Plan so staff are supported to provide safe care to someone who for example isn’t verbal. Flags to support trauma informed care are also key. A key consideration too is a patient portal available in languages other than English.

Proxy access is important with protections and permissions. For example, accessing health care for an adult child with a disability in the absence of guardianship –e.g. NDIS offer “common sense” choices – where people don’t need to get Guardianship to access their adult child’s records. We can sometimes have a bias towards the presumption of abuse e.g. in carers for people with disability, people who are frail aged.

Check the Digital Health page for the full series of webinars and information sessions on the WA Electronic Medical Record.

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.

A wild reflection from digital health summit

Posted on September 20, 2022

 

With the Wild Health Summit in Melbourne 18 October 2022, we are inspired by the idea that digital health could improve the patient experience even while the services themselves are quite fragmented. We need to continue to champion consumer voices in this space – too often they can be an after-thought.

We asked one of our consumer representatives, Robert McCormack, if he has any key questions or reflections to bear in mind for this upcoming Wild Health Summit event, having recently attended as a HCC consumer representative at the Digital Health Institute Summit (Perth 2022) held in August at the Perth Convention and Exhibition Centre.

Q: What were your highlights that might be of interest to health consumers?

A: I met a number of healthcare and IT professionals but did not see another health consumer.  However in conversations with these professionals, several times they relayed personal experiences as either patients or as carers.  Nonetheless, there is a case to have more consumers at the table.

Q: With no other consumers, do you have any comment on that – i.e. would it be of interest to consumers in future? Should we be advocating for more consumer places?

A: the need to engage widely with all stakeholders was emphasised by the keynote speaker, and I am of the view that the patient/carer/consumer needs to be seen as the principal stakeholder.

Q: any comment you might have on the value of you being there with a consumer lens?

(Mr McCormack was generous to provide us with a report on his experience at Digital Health Institute Summit (Perth 2022), which is summarised, below…)

Some Key Observations

The participation of over 200 delegates suggests there is substantial interest across the State in the potential benefits that could be delivered from the implementation of a solid digital health strategy.

The delegates comprised a good cross-section of health professionals including nurses, pharmacists, physiotherapists, and general practitioners through to senior executives from WA Health, and IT professionals with only a few health consumers.

The opening address by Simon Millman, the Parliamentary Secretary to the Minister for Health; Mental Health suggests the Western Australian Government has some commitment to digital health as also evident in its budget commitment to the first phase of developing a digital health record.

In conversation, most delegates acknowledged that while there has been some useful progress in rolling out aspects of digital health, considerable work needs to be done to achieve substantial potential benefits. One speaker described the current progress as additive rather than transformative.

Dr Helen Bevan, the keynote speaker, emphasised, with reference to her experience in the English National Health Service, the need to engage fully across the widest net possible of stakeholders to gain acceptance for proposed change, and this engagement needs to be done in the formative stages.

She particularly emphasised the need to identify and engage the key players, the “super-connectors”, in informal networks as well as dealing with the formal networks.

I note this approach contrasts with the experience of many health consumers in that they are too often ignored locally in the early developmental phases of most healthcare projects.

I am of the view that consumers as the clients of healthcare should be the primary stakeholders consulted in any proposed development of initiatives.

The fragmentation of responsibility for health across federal and state governments and the delivery of services across multiple providers presents particular challenges in assembling fragmented data.  While the My Health Record potentially brings data together from a number of providers, the record for each patient is mainly incomplete and may not have up-to-date information.

Hospitals use a myriad of systems that don’t automatically share data although some progress is being made as evident in a presentation by staff from Fiona Stanley Hospital.

The development of artificial intelligence tools is seeing the improved diagnosis and management of healthcare.

For example (of the above), as evident in the Health in a Virtual Environment (HIVE) project at Royal Perth Hospital and research undertaken by the CSIRO in diabetic foot ulcer diagnosis and management.

The need to think beyond the current paradigms in healthcare delivery was highlighted in a presentation on delivering chemotherapy in the home by Lorna Cook Company Director & Co-Founder, View Health Chemo@home.

In a similar vein, it should be noted that COVID has caused a rethink on service delivery models which has seen, for example, the development of telehealth options and electronic prescriptions.

Digital health innovation has the potential to improve the patient experience in booking appointments, such as the Health Engine system developed by Dr Marcus Tan.  In contrast, while the WA Health Department has invested in developing the Manage My Care app and is working on further enhancements to this app, this system is currently of limited use in that not all outpatient appointments are recorded on this system and patients have no opportunity to choose appointment times.

The trade stalls were mainly commercial IT companies who have had experience in developing and implementing systems across healthcare systems.  We can expect some of these companies will have opportunities to roll out digital systems across the WA health service providers.  It will be interesting to see the extent pre-existing systems will be adopted and the degree of customisation of these systems to meet our requirements versus bespoke development of new systems.

Concluding Remarks

While there have been several useful developments in the digital health space,

to realise the substantial benefits of a comprehensive integrated digital health strategy will require wider engagement of the broadest possible group of stakeholders at the earliest stages of the project with a particular focus on consumers/patients as the primary stakeholders together with the substantial investment of resources and talent over a prolonged period.

The Health Consumers Council can potentially play a key role in shaping the digital future of healthcare delivery by providing a broad range of consumer insights required for the critical success of the digital health strategy.

(This article/report is courtesy of Robert McCormack, HCC consumer representative.)

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.