Category: Blog

Digital Health Series – Patient Portals

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.

Reflections on the Digital Health Festival 2024

By Pip Brennan, Electronic Medical Record Consumer Reference Group Convenor

I was lucky enough to attend the Digital Health Festival 2024 in Melbourne, with WA consumer and health professional colleagues. The Health Consumers’ Council in WA negotiated to obtain three free consumer passes, and WA Health’s Electronic Medical Record (EMR) Program Team funded travel for myself and HCC Engagement Coordinator Kieran Bindahneem. We met Ricki Spencer in Melbourne, they are a member of the EMR Consumer Reference Group and split their time between WA and Victoria.

With eight concurrent streams and mostly 30-45 minute presentations, the Digital Health Festival was definitely overwhelming. Some of the concurrent presentations offered headphones, and these were by far the easiest presentations to stay focused in.

At the entrance was the stand where I took the opportunity to include a message about the importance of consumer involvement. #NothingAboutUsWithoutUs. It was not a common idea, and presentations mentioning co-design usually meant different health and government professionals collaborating. The wrap up report for the Digital Health Festival doesn’t mention the word “consumer” or “patient” anywhere – we sit somewhere in the “Other” category in the pie charts and tables. I have been approached to speak at the Digital Health Festival in 2025.

What has stayed with me

  • Dr Wonchul Cha’s keynote presentation about the Samsung Medical Centre in Korea, especially how the Patient Reported Outcomes surveys, which are integrated into their electronic medical record, achieve an 80%-90% response rate. They are a seamless part of the clinical appointment, and keep patient wellbeing right on top of the agenda.
  • Meeting up with consumer advocates including Mehmet Kavlakoglou, Harry Iles-Mann, and Ricky Spencer. Some quiet times talking outside the hub-bub of the Festival were restorative and insightful.
  • Talking to Healthcare Information and Management Systems Society (HIMSS) staff and filling in a missing piece of the PROMS puzzle in my mind – how they need to be integrated into an EMR and used as part of care to get the return rate that really tracks patient outcomes (see Samsung example above).
  • Listening to a CSIRO presentation on the work they’re doing regarding consent processes and how to have ongoing consent facilitated when our data is used for research – consumers aren’t actively involved yet, but hoping they will be soon.
  • Panel discussion on how AI is supporting clinical decision making where one speaker suggested that over time, clinical trials may not be approved unless they have already gone through AI as this will reduce potential harm to patients.
  • I don’t need to feel total despair that each state and territory is doing its own thing regarding electronic medical records. Interoperability is still going to be technically possible. It is the number one consumer priority! The key challenges we have in relation to digital health are actually cultural – but the interoperability work at the federal level mandating interoperability is helpful.

 

Some reflections

  • What would it be like to have a consumer-co-led digital health festival with a focus on research translation, rather than research commercialisation? Some presentations were very sales-y.
  • Most states and territories have implemented their EMRs without significant or meaningful consultation with consumers, and even in some cases clinicians. Not so in WA! And after the conference the WA Budget announcement confirmed that WA will be funded for the next three years to develop a tender and appoint a supplier for WA’s EMR.
  • We have an EMR Consumer Charter in WA and a Consumer Reference Group working with the WA Health Team. We are upskilling ourselves and reflecting on what are key consumer priorities for an EMR. See our web page for all updates.

Strengthening Reconciliation Post-The Voice Referendum: RAP and Acknowledgment of Country

By Tania Harris, Engagement Manager, Aboriginal and Disability Engagement Lead

Reconciliation in the Wake of The Voice Referendum

In the historical context shaped by The Voice referendum – a pivotal event proposing constitutional recognition and a parliamentary voice for Aboriginal and Torres Strait Islander peoples – an organisation’s Reconciliation Action Plan (RAP) takes on an even greater significance.

  • The Voice referendum has brought the aspirations and needs of Indigenous Australians to the forefront of the national conversation.
  • As Australia reflects on the outcome of The Voice referendum, there’s an energised call for organisations to embed Indigenous perspectives into their core values.

The Role of a RAP Post-Referendum

Now, more than ever, a RAP must do justice to the momentum created by discussions around The Voice referendum. This involves not just planning but also taking action that symbolises respect, empowerment, and partnership.

  • An organisation’s RAP should go beyond ceremonial acknowledgment to lay down practical pathways for Indigenous inclusion and engagement.
  • Crafting a RAP in this climate should reflect a commitment to listening to Indigenous voices and upholding their rightful place in decision-making processes.

Crafting an Acknowledgment of Country That Resonates

An Acknowledgment of Country becomes particularly resonant in the post-referendum setting, where it’s expected to echo the progress and promises of national reconciliation efforts.

  • It is crucial to not only acknowledge the Traditional Owners of the land but to connect this acknowledgment to contemporary initiatives like The Voice referendum.
  • Organisations can demonstrate their support for The Voice by referencing the initiative in their Acknowledgments of Country, reinforcing their commitment to actionable change.

Aligning Your RAP with The Voice Aspirations

Incorporating The Voice aspirations into your RAP not only strengthens your organisation’s dedication to reconciliation but also aligns with the broader objectives of national unity and respect.

  • Ensure that your RAP reflects an understanding of the historical and cultural significance of constitutional recognition and representation.
  • Utilise the RAP as a platform to advocate for and support the ongoing dialogue around Indigenous issues sparked by The Voice referendum.

A New Era of Commitment

The post-referendum era demands a renewed dedication to Aboriginal and Torres Strait Islander rights and recognition. This commitment is tangibly expressed through a RAP, Acknowledgment of Country, and the actions that flow from these intentions.

Advance Reconciliation: Acknowledging Country Workshops

In the spirit of The Voice referendum, aspiring to a future where Aboriginal and Torres Strait Islander voices are heard and respected, we invite you to attend Health Consumers’ Council’s  Acknowledging Country workshop. Your participation not only deepens your own understanding but also contributes to Indigenous health initiatives.

Join a workshop to ensure your organisation’s practices are attuned to the aspirations of The Voice and contribute to a reconciled, informed, and inclusive Australia.

Navigating the Path Together: Insights from the Cancer Services Plan Consultation Report

Dealing with a cancer diagnosis is more than a medical journey; it can be the start of a challenging path through the complex maze of healthcare systems, at a time of physical and emotional change for both the person diagnosed and those around them. The Department of Health (DoH) recognised the need to understand the experiences of those at the heart of cancer services — patients and their carers. The Department of Health partnered with the Health Consumers’ Council (HCC) to gather insights that will help inform the future of cancer care in WA.

We are pleased to be able to share this report with you. We would like to thank the patients, consumers and carers who chose to share their stories and experiences with us so generously.

We would also like to thank Dr Susannah Morris, who provided our team with expert advice and support, and offered an invaluable consumer focused insight into this and many other cancer projects in WA and Australia. We also recognise and thank Susannah for her considerable input into this report.

The Essence of Consultation

The consultations held in March and April 2024 were vibrant discussions filled with stories, challenges, and aspirations. A diverse group of 32 individuals participated in workshops and interviews to share their experiences with cancer care pathways in WA. The feedback gathered from these sessions was insightful and is hoped to have a significant impact on the enhancement of cancer services.

Themes of Reflections

Participants were open and candid about their interactions with cancer services. They reflected on the parts of their care that were difficult, and the aspects that were handled well. This feedback is crucial in understanding the emotional and practical needs of patients as they navigate cancer treatment.

Location, Location, Location

One of the critical areas of discussion was the configuration and location of care. Though the specifics of possible configurations were not directly presented for feedback, the need for flexibility and accessibility in care locations was a recurring theme. Wherever the location was, care needed to be centred around the person and their needs. This aspect of care is not only about geographical convenience but also about the comfort and peace of mind patients have when they know support is within reach.

The Experiences That Matter

Above and beyond the technicalities of treatment, what stood out in the consultations was the need for better care navigation and a more consistent and early linking of consumers and carers with all pertinent support services, to be treated as whole people not just a disease. Better communication, flexible appointment times, a more seamless and coordinated care experience, care navigators and navigation tools were among the top suggestions from participants.

Aligning with the WA Cancer Plan

As the consultations revealed, there’s an essential need to ensure that cancer services in WA are aligned with the second goal of the WA Cancer Plan 202-2025: to ensure that consumers have the best experience of cancer care. This implies that optimal care should be person-centred, safe, high-quality, multidisciplinary, supportive, and well-coordinated. People were also concerned that they ‘lived well’ with and beyond their diagnos, in keeping with priority three of the plan. The consultations highlighted that while much has been achieved, there are still gaps that need bridging.

 Looking Ahead

The Australian Government’s Australian Cancer Plan (2023-2033) has set a new backdrop for the continuum of cancer service delivery. The findings from the WA consultations will not only contribute to refining the state’s approach but also ensure that the voices of consumers are heard in the broader national context.

The Cancer Services Plan Consultation Report provides a snapshot of current consumer experiences with cancer services in WA. It’s a living document that echoes the voices of those most affected by cancer and offers a roadmap for improvements that could significantly enhance the patient journey.

Remember that as we look toward the future, your voice and your experiences are powerful catalysts for change. If you or a loved one have navigated the cancer care system, consider sharing your story. It’s through these shared experiences that we can work together to shape a cancer service system that not only heals but also supports and empowers every step of the way. You can share your stories and experiences at  Care Opinion, a platform supported by WA Health where you can remain anonymous.

The Importance of Acknowledging Country

By Tania Harris, Engagement Manager, Aboriginal and Disability Engagement Lead

An Acknowledgement of Country is a sign of respect for Aboriginal and Torres Strait Islander peoples’ ongoing connection to their traditional lands. In healthcare settings, this practice becomes profoundly significant. Many organisations, individuals and businesses are increasingly recognising that a genuine Acknowledgement of Country can pave the way for better services and relationships with Indigenous communities.

  • An Acknowledgement of Country is not just a statement; it’s a commitment to listen, learn, and work towards equity and reconciliation.
  • It acknowledges Australia’s history, predating colonisation by tens of thousands of years.

Why Acknowledge Country?

Cultural competence and respect are crucial in providing quality care and services to all. An Acknowledgement of Country is a step towards cultural safety in services, recognising the specific place Indigenous Australians hold in our country and society.

  • It’s a reminder that every day, organisations and businesses operate on land that holds thousands of years of Indigenous history.
  • For staff and clients, the acknowledgment can foster an environment of inclusiveness, respect, and partnership.

The Impact of Acknowledgment on Indigenous Communities

While an Acknowledgement of Country is not a singular solution to inequity and racism, it is an integral part of the journey towards genuine partnership and inclusion.

  • It’s an opportunity to reflect on the impact of colonisation on Aboriginal communities and our commitment to addressing inequities.
  • It can contribute to an environment where Indigenous voices are heard and valued, especially in discussing needs and services.

How Organisations Can Offer a Meaningful Acknowledgement

Health Consumers’ Council acknowledges the need for confidence and personalisation in delivering an Acknowledgement of Country. That’s why we offer specialised training sessions.

  • It’s crucial to acknowledge the Traditional Owners of the land and pay respect to Elders, past, present, and emerging.
  • Workshops are designed to provide a safe, immersive experience with opportunities for practice and immediate feedback.
  • The training can be delivered online or in person, emphasising meaningful engagement rather than tokenistic gestures.

Offering More Than Words

The practice of giving an Acknowledgement of Country must go beyond being a part of housekeeping; it should reflect ongoing learning and action.

  • Acknowledgments should not be tokenistic but done with thought and consideration for what they represent.
  • They should inspire self-reflection, truth-telling, anti-racism efforts, and genuine partnership.
  • An Acknowledgement of Country reflects the values and commitment of your organisation to our shared history and the present-day situation.

Continuing the Journey

The journey toward true reconciliation and cultural safety is continuous. The Acknowledging Country workshops by Health Consumers’ Council are part of this journey, empowering individuals and organisations to make their Acknowledgments with confidence and sincerity.

Acknowledging Country Workshops

Does your organisation offer an Acknowledgement of Country at meetings and events? Are there ways you can make these acknowledgments more meaningful and reflective of your commitment to reconciliation? Take part in Health Consumers’ Council’s Acknowledging Country workshop to deepen your understanding and practice.

Take the next step in your reconciliation journey by booking an Acknowledging Country workshop and develop a meaningful practice that respects the traditional custodians of the land on which you live and work.

Opinion: It’s time for full transparency on who’s making money out of our healthcare

By Clare Mullen, Executive Director

So, there’s a few spats going on on social media at the moment in relation to health finance. Like on this post on LinkedIn where people representing surgeons, and people representing private health insurers, seem to me to be arguing about which one of them is going to charge the patient for the cost of surgical items.

So – it’s Saturday morning, and I have a bit of time, so I thought I’d try to see what some of these interests might be.

First up – the average salary of a surgeon

I couldn’t find any publicly funded sources of information from my quick search. But this article from Medrecruit (a medical recruitment firm) say they’ve used Australian Tax Office data to come up with an average taxable salary of $394,000 a year. The same company writes that neurosurgeons – like those who do spine surgery – can earn up to $800,000 a year.

So, between the 2023 article from Medrecruit, and a 2023 article from GlassDoor I feel comfortable reaching the conclusion that:

  • the average salary of a surgeon in Australia is around $340,000/year

Then to health insurer profits

The five biggest health insurance companies in Australia, according to the national consumer group Choice Australia are:

  • Medibank
  • Bupa
  • HCF
  • NIB
  • HBF

So I looked at the most recent annual reports (for 2023) for all of these companies. Some headlines:

  • Four of these five companies reported multi-million dollar profits last year – the exception is HBF who reported a loss of $87.7m, down from a loss last year too.
  • The average annual profit reported across the four was $344m/year.
  • Collectively, they reported profits of $1.3b.
  • Two of these five are set up as not-for-profit organisations – HCF (profit of $171.4m) and HBF

And so to the salaries of senior staff in health insurance firms…

I looked at what private health insurers pay their senior staff. (As a passing observation, if I didn’t know better I’d say that these firms don’t want you to work out what their senior staff get paid, because many of the reports make this information as opaque as possible. But I do know better. Except for HCF – they *really* don’t want you to know so they don’t publish it.)

Taking out HCF (because they don’t make that information available online), the average pay for the Chief Executive of the three other health insurance firms that reported a profit (or surplus) is $1.6m a year. Graph showing the comparison between the pays of health insurance CEOs, surgeons, and average earnings in Australia

As a comparison, the average for adult full-time earnings in Australia is $101,000/year. When you do a comparison that includes all earners (i.e. including those working part-time), the average annual salary is $74,500.

(And the CEO at HBF is reported as having been paid $731k to June 2023.)

So what?

So what does this mean? Is this just me whingeing about people who work hard to earn their money?

Nope. This is me trying to reconcile the reality of healthcare in this country. Where your socio-economic status determines your health, but where we’re seeing more outrage about which bit of the health system that’s making lots of money for the companies and people involved in providing that healthcare is going to pass on the cost of that healthcare to the people needing the healthcare.

It’s time for full transparency in health finances

As an informed health consumer, I find it really frustrating how challenging it is to find out about the financial interests in health. I want to know if the person or company providing me with care is doing it for my benefit, or for theirs.

This website from the Federal Government is a good start to find out about likely out of pocket costs for treatment you might be considering – https://medicalcostsfinder.health.gov.au/

And as someone who speaks regularly to people who are battling to get access to the healthcare they need – either having to overcome financial challenges, or grapple with bureaucratic processes that seem to have been designed by people who don’t give a fig about the people trying to access healthcare (which I know isn’t true!) – I want to see a much stronger voice for consumers and the community on this issue.

So let’s have full transparency on health finances. A few ideas off the top of my head on this Saturday morning:

  • If any healthcare provider receives any public funding (like Medicare), let’s require them to publish information about profits, and any individual salaries over the average annual salary
  • If any provider negotiates financial deals – like commission to preferred providers, or incentives for particular types of treatment – let’s require this to be published, and the information be made available to the consumer when they’re making a decision about treatment options
  • Along with the Choosing Wisely questions, let’s add a question about “What are the financial implications for you – the provider – in any of the options we’re discussing?”

 

 

Sharing WA consumer and lived experience perspectives nationally

Social prescribing – meeting the health needs that clinical care can’t address

This month I was invited to be part of a roundtable in Canberra looking at the topic of social prescribing. Social prescribing is where clinicians can refer people to non-clinical services that contribute to their health and wellbeing. Some of the most regularly used services are activities that contribute to people feeling connected and supported in their home and neighbourhood – like a community gardening group for example.  

At HCC we regularly hear from people about how their health is impacted by more than the health services they receive. Personally, I have followed the work of the pioneers of social prescribing in the UK – Mendip Health Connections – where volunteers from the local community are actively involved in strengthening the social fabric of that community that contributes to individual and community wellbeing.  

In WA we have a thriving example of social prescribing in place in the shape of Compassionate Communities. These focus on ensuring that anyone facing a life limiting condition, or the end of life, is able to be cared for within and by community. You can find out more about this work at the website of this new organisation Compassionate Communities Australia https://compassionatecommunities.au/  

While I’m not a huge fan of calling this kind of care social prescribing – with connotations of medicalising activity that doesn’t need to be medicalised – it’s clear there is momentum building behind the idea in Australia which I hope will increases access to the healing power of community for more people.  

 

Sharing WA consumer and lived experience perspectives with the Federal Department of Health and Aged Care 

While I was in Canberra I took the opportunity to meet with a couple of teams in the federal Health Department. 

First up, I met with the team who are responsible for implementing the National Obesity Strategy, and the National Prevention Strategy. It was a really valuable meeting and I was able to share a number of lived experience and consumer stories from the work HCC has been doing on this topic since 2018.  

I also got a chance to meet with the team at the health department responsible for what they call thin markets. This team are looking at options for delivering healthcare in areas where there isn’t enough naturally occurring provision of health services. It was really interesting to hear about the Integrated Care and Commissioning Trials that are bringing together health, aged care, Dept of Veterans Affairs, National Disability Insurance Agency and the National Indigenous Australians Agency to look at co-commissioning of services. One of the ten trial sites is in the Kimberley.  

Strengthening relationships with other consumer groups across Australia 

Also this month, I was in Adelaide to meet with all of the CEOs or the Executive Directors of the peak health consumer organisations in the other states and territories, as well as the national consumer peak, Consumers Health Forum. It was a really productive meeting where we explored opportunities for us to work together to maximise our collective impact.  

It was great to share our collective vision for consumers leading change in healthcare, as well as to share our collective challenges: how sometimes consumers may be at the table, but it’s not yet translating into change; and the eternal challenge of meeting our big ambitions without big budgets.  

from L-R: Anthony Brown, Health Consumers NSW; Alison Coughlan, Health Issues Centre; Bernadette Praske, Health Consumers Queensland; yours truly, HCC; Allison Willis, South Australia; Elizabeth Deveny, Consumers Health Forum; Ellen MacDonald, Health Consumers Tasmania; Darlene Cox, Health Care Consumers Association (ACT)

Solidarity for the consumer movement in Victoria 

You may have read the sad news that our colleagues in Victoria – the Health Issues Centre – have had to take the unfortunate decision to close their doors and explore transitioning their operations to another agency. This is due to issues of financial sustainability, impacted by the withdrawal of government funding. We look forward to seeing what emerges from this process and stand ready to work with consumer leaders in that state when the time is right. 

Clare Mullen, Executive Director, March 2024

 

Digital Health and the Electronic Medical Record – February 2024 Update

WA has been talking about getting an Electronic Medical Record for decades but to date, this has not exactly eventuated.

The first iteration of a digital record in our state came about when the Fiona Stanley Hospital was built in 2013. A newer version of this digital medical record has been in the process of being rolled out across our vast state since 2022. This has been done in preparation for a full Electronic Medical Record.

A project of this scale will require significant investment. During 2022-2023, a Business Case was developed and has now been submitted to treasury for consideration.

In 2021, HCC worked on a Consumer Charter for an Electronic Medical Record. If our state is successful in obtaining funding for the full Electronic Medical Record, there will still be a 10-year process to get a finalised version working in all our public hospitals. That means consumers will still be able to influence the design to ensure it meets our needs, as well as clinician and health system needs.

What do consumers think?

Consumer Involvement

HCC has been funded by WA Health to establish a Consumer Reference Group to help shape the project.

We will run three webinars between now and June 2024, and our Consumer Reference Group will meet four times within that period as well. We aim to build on the work of the Consumer Charter to provide considered feedback about our concerns and hopes for the key elements of an Electronic Medical Record.

We invite you to join us for the webinars; more details will be available soon and we will post the recordings online for those who can’t make it.

Connecting Across our Whole Health System

“Interoperability” – our information able to be accessed by ALL our care team.

An Electronic Medical Record is all your health information from within public hospital walls. Consumers have said they are interested in their private hospital specialists and GPs also being able to access important health information. Linking up residential and home-based aged care services has also been mentioned regularly. This is not the current focus of this program. Our role as consumer advocates is to link in with what is happening at a federal level with My Health Record. Ideally, we can help ensure the consumer ambition to have more integrated care is supported through digital innovations such as a patient portal that links up all our records.

Patient Portals

These are the public-facing part of an Electronic Medical Record – the part we will interact with. This is an area that we need to be able to influence the design of – seeing and changing appointments, being able to message the care team, etc. Continuing to link in with the federal developments of My Health Record will be a key consumer advocacy point.

Data Use, Privacy and Confidentiality

Connecting data across systems is currently very difficult. This makes it difficult for us to know if  health interventions are having the health outcomes we seek. An electronic medical record will generate data that could help us better understand the health outcomes being created through our health system. Meanwhile, My Health Record offers us the opportunity to lock down parts of our record, and know who has accessed our record, and we need to understand what might be possible in an Electronic Medical Record.

Patient Reported Outcome Measures and Patient Reported Experience Measures

Known as PROMS and PREMS and aiming to measure the patients’ views of their experiences and health, these measures are being developed in a piecemeal fashion in different areas of health and different parts of Australia (and the world). They will be part of the Electronic Medical Record and we need to be part of the conversation about what measures are used or developed.

Care Pathways – Sandwich or Biscuit?

Care pathways are informed by a number of factors, including evidence from clinical practice, research, and service improvement projects. These are a description of the best evidence informed care that consumers can expect. They are not meant to de-personalise care, rather care pathways are “guard rails” to support safe and high-quality care. These too will be encoded into the My Health Record and will require a coming together across WA’s public health system to agree on these. For example, if you are receiving diabetic care and experience low blood sugar in one part of the health system, you may be offered a sandwich. If you are in another part of the health system you may be offered a biscuit. How these are harmonised and developed across the state requires consumer input.

 

Pip Brennan, Consumer Consultant, February 2024

 

Stay out of politics? Unfortunately, we don’t have that luxury

This year – 2024 – is going to be a big year in politics.

If you haven’t started to see more of your local state politicians and candidates in your social media or in your letterbox yet, you soon will. In March 2025, WA will hold its next State General Election.

And if that’s not enough politics for you – don’t fear, there will be a Federal election at some point in 2025, so we’ll also see more of our Federal politicians and candidates this year.

Why does this matter to Health Consumers’ Council, our members and consumers?

It matters because of what makes a difference to our health.

When we think of health, many people think of going to the doctor, or even the hospital. Estimates vary, but some studies suggest that medical care accounts for less than 20% of health outcomes[1].

It’s clear our health and wellbeing is about so much more than medical care.

The things that happen to and around us, and the conditions in which we are born, grow, work and live, are just some of the things that shape our lives and health. Both at an individual level, and a community level.  These things are called the social determinants of health, and according to the World Health Organisation, they account for between 30% and 55% of health outcomes – which is a bigger impact than healthcare or lifestyle choices.

Fish don’t know that they’re swimming in water – the social determinants of health are our water.

Addressing these social and societal impacts is vital for improving health and wellbeing and addressing long standing inequities in health. That’s why you’ll see HCC talking about things like racism, stigma, housing, poverty, the effects of loneliness and isolation, early childhood trauma, raising the rate of income support, and climate change – all things that, when improved, contribute to creating a more equitable and resilient community and positive impact on our health and wellbeing.

That’s also why, as an organisation focused on health and wellbeing, we talk about things like Australia Day, The Voice referendum, Black Lives Matter, LGBTIQA+ Pride, and Disability Pride.

We subscribe to the idea that “Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity”[2].

This means that addressing inequity in health means addressing the impact of trauma, and issues from the past, and how they affect people in the present. It’s about recognising how respect and listening plays a role in people’s welfare. And it’s about the ongoing impacts of racism and stigma – on an individual level, in culture, and in many cases on a systemic and institutional level, across politics, law, social practices, health systems and justice systems.

One of our objectives is to “provide advocacy for consumers experiencing problems with the health system, particularly the vulnerable and/or disadvantaged”[3]. To do this properly, we need to engage with, and do our best to influence, decision-makers and people in positions of power. To some, that is the definition of politics.

Concepts of disadvantage – like racism, stigma and poverty – may only seem political if they don’t affect us personally. For those who are disadvantaged by the way we’ve structured society, “the personal is political”[4].

To meet our responsibility to the WA community, and work towards our vision of equitable person-centred healthcare, we will continue to create opportunities for the lived experiences of consumers, carers, family members and community members to engage with, and influence, decisions that affect our health and wellbeing – both within healthcare and beyond.

We will be sharing more about our plans to provide opportunities for members and stakeholders to engage and influence state and federal politicians and candidates in 2024 and 2025 – it’s a big time for health and social care and we must have our voices front and centre in these discussions.

For the good of the WA community.

Clare Mullen, Executive Director, February 2024

 

 

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863696/

[2] Constitution of the World Health Organisation, 1946

[3] HCC Rules

[4] https://www.britannica.com/topic/the-personal-is-political

Advocating for consumer rights as we live with COVID

We recently held another in our series of Consumer Conversations in relation to COVID. On 12 December 2023, consumers had the opportunity to hear from Dr Andy Robertson, WA Health’s Chief Health Officer.

Based on that discussion, and the questions raised before and after, we have today sent a briefing of consumer sentiments about COVID to WA Health leaders, including the Director General, and the Chief Executives of the Health Service Providers.

You can read this briefing here: COVID Health Consumer sentiments HCC December 2023

We know that many people remain concerned about COVID, and are concerned at the lack of awareness in the general population of the risks that COVID still poses.

In 2024, we are planning to host further community updates with health leaders to help inform the community about this important health issue.

To subscribe for updates to receive information about these events, sign up to our enews here https://www.hconc.org.au/resources/enews/ or follow us on Facebook https://www.facebook.com/hconcwa

Clare Mullen, Executive Director, December 2023