Tag: Consumer Representation

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

Encouraging a Strong WA Consumer Voice in Medicare Taskforce Report

Posted on February 22, 2023

 

There is a lot of reform taking place at the moment in the area of primary health care and how this interacts with hospital and community care.

As the needs of Western Australian communities may differ from those of other regions, it is essential that the voice of WA is heard in this reform work. There are several opportunities for WA consumers to participate in this important work, including watching a replay of a recent community briefing by the Consumers Health Forum (CHF) on the Medicare Taskforce report or registering for the upcoming session to inform their feedback on the report, which will be held on March 22.

Background

In early February 2023, the Federal Government released the “Strengthening Medicare Taskforce” report – Elizabeth Deveny, CEO of the national Consumers Health Forum (CHF) was the consumer voice at that table. Learne Durrington, CEO of the WA Primary Health Alliance was also at the table, representing Primary Health Networks.

Last week, 3 February, CHF held a community briefing session on the report. You can watch the recording of that webinar here.

CHF will also be holding another session on 22 March (2:30 pm AEDT) to inform their input to the next stage of this process. If this is an area of interest to you, we encourage you to register here: a pre budget follow up webinar to talk about the key messages for consumers that CHF want to promote to decision-makers and the wider community.

Upcoming HCC consumer representative networking session

On 31 March (10 am – 12 pm AWST), HCC will be hosting the first of our consumer representative networking sessions for 2023. We’re delighted to advise you that Elizabeth Deveny from Consumers Health Forum in Canberra will be joining us virtually at that session so we’ll have a chance to explore the implications for WA with her directly. Register here.

~ Clare Mullen, Deputy Director, HCC

Consumer/Lived Experience Conference report – International Congress on Obesity 2022

Posted on October 25, 2022

Report by Clare Mullen, Health Consumers’ Council WA

In October 2022, over 1,000 people were in Melbourne to participate in the International Congress on Obesity.

I had the opportunity to attend as a member of the Weight Issues Network (WIN) as a Lived Experience speaker, as well as through my roles with Health Consumers’ Council WA, The WELL Collaborative and the Obesity Collective. My attendance was part funded by WIN (thanks to support from the ICO organisers) and part by HCC, through my work on the WELL Collaborative, that’s funded by WAPHA and the Department of Health.

There were three other people from WIN who attended as Lived Experience speakers. Dr Nic Kormas, also on the WIN Board as a clinician, was attending too.

There were three main streams of content:

  • Basic research[1]
  • Clinical – looking at treatment and care
  • Public health – looking primarily at prevention options

There were also a number of cross-cutting sessions – where people with perspectives from each of these streams all presented together. Apparently this is not very common – which I found surprising.

 

Lived Experience/consumer speakers were involved in five of the sessions, and we also ran a workshop on “So you want to engage people with lived experience of obesity?” which was attended by about 50 people. We all received positive feedback about our contributions to the discussions, and I hope we’ve paved the way for Lived Experience speakers to be involved in more of the sessions in future.

We also had a table in the exhibition hall and had people signing up to the WIN mailing list, as well as taking away a practical guide to creating weight inclusive spaces in clinical settings. (I have some of these in hard copy, so let me know if you’d like one to take along to any healthcare setting you attend regularly!)

Takeaways and personal reflections

  • If carrying extra weight is either causing you health concerns, or you’re concerned about your increased risk of future health concerns, treatments are available. These include a few different types of medications as well as surgery – and options are increasing. These clinical interventions may complement individual behaviour which could include changes to nutrition, physical activity, sleep, stress and social connections.
  • Extra weight can be a risk factor for some people for some health issues. To work out if carrying extra weight has health implications for you it’s important to speak with an informed health professional who has contemporary and detailed knowledge on obesity, overweight and health – and can help you assess your personal risk, in the context of your life, so you can work out the best treatment and care options together.
  • Currently, it’s really hard to find informed health professionals who have contemporary and detailed knowledge on obesity, overweight and health. Health Consumers’ Council is working with the WA Primary Health Alliance and the WA Department of Health to provide consumers with access to a list of health professionals who have undergone additional training on this topic as a starting point – watch this space!
  • Adolescence may be a critical time to offer person- and family-centred interventions – changes made at this point can be life-changing and long-lasting.
  • There is a critical shortage of treatment services for obesity – particularly for adolescents. (I personally find this borderline unethical.)
  • I think there needs to be a lot more discussion and review about bariatric surgery. I learned that currently, it’s believed to be difficult to work out which patients will get positive outcomes from the treatment – with outcomes varying significantly. I was also reminded that one of the possible benefits of this surgery is extended life expectancy – and that this effect may still be likely, even if someone regains weight after the surgery. (Overall, I think we need to upskill a few more consumers to learn about the technical details of this treatment and cast an informed consumer lens over the evidence and be part of the debate. I certainly don’t feel informed enough to go up against clinical experts on this subject.)
  • From a value-based healthcare point of view, I believe there could be some consideration given to funding models for bariatric surgery – for example, I wonder whether surgeons would be more invested in helping people to work out if surgery was going to be right for them, if the surgeon’s payment was impacted by the outcomes of the surgery (as assessed against patient-reported outcome measures agreed upfront). In fact, this could be applied to lots of types of treatment…
  • Weight stigma has a huge role to play in muddying the waters on healthcare in this area. I’m left wondering, how can we get to a place where everyone can distinguish between decisions we’re making based on desires we might have to look a certain way (influenced by societal pressures) versus decisions we’re making that could improve our health – and so make a really informed decision about what actions to take?
  • I think we also need more deliberative discussions as a community about how we navigate the various aims of a) dismantling the obesogenic environment[2] we live in, b) creating the conditions where people are able to more easily do things that have a positive impact on health (and broaden this beyond nutrition and physical activity), and c) ensuring personalised care and treatment is available to people whose health is impacted by carrying extra weight. Unfortunately, the public health narrative still too often contributes to weight stigma.

Clare Mullen, October 2022

p.s. as well as the serious work, it was great to meet and connect in person with the people involved in this work that I’ve been meeting online for the last couple of years.

[1] Basic research, also called pure research or fundamental research, is a type of scientific research with the aim of improving scientific theories for better understanding and prediction of natural or other phenomena, https://en.wikipedia.org/wiki/Basic_research#cite_ref-Research2014avg_1-0

[2] “The term ‘obesogenic environment’ is used to describe an environment that promotes obesity”, https://www.aihw.gov.au/reports/overweight-obesity/overweight-and-obesity/contents/causes-of-overweight-and-obesity

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.)