Category: Blog

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 A newer version of this digital medical record has been in the process of being rolled out across our vast state since 2022.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 GP 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

2023 in review

I can’t quite believe that we are very much at the end of this calendar year period. As I reflect back on the year that was many highlights come to mind:

  • Firstly, reflecting on internal changes at Health Consumers’ Council, we had a change in leadership which led to some other changes internally and how we’re organised. We’ve also seen an increase in the amount of requests we’re receiving for involving consumers in health policy and planning projects – which is great to see.
  • This year we also calculated that since 2020 we’ve seen a 30% increase in requests for independent advocacy. We know that independent advocacy can help to redress the power imbalance that many people experience as they navigate the complexity of our health system or when things go wrong in healthcare and will continue to advocate for increased access to this support for more Western Australians.
  • Through these changes, we’ve maintained our passion and commitment to advocating for consumer, carer and community rights and interests of people who use health services – and will continue to champion the importance of an independent voice for consumers in health.
  • More broadly, we saw the start of significant changes in many services and systems that people in the community rely on: in disability, in aged care, in primary care (GPs and pharmacies), and in hospital and community health services.
  • We must have strong and diverse voices involved in these discussions – with a collective understanding of the importance of joined up services. Otherwise, all these reforms risk creating a modernised, but still highly fragmented health and social care system that many of us struggle to navigate.
  • To address that, we experimented with a novel approach to engaging consumers, carers and community members in response to WA Health’s work on the Emergency Access Reform program – and we’ll be reviewing that approach in the new year.
  • We advocated on a wide range of health topics – including providing input to the WA Safety and Quality Strategy and advocating for robust and diverse consumer involvement in the decisions regarding the new Women’s and Newborns Hospital – this work will continue for years to come.
  • Beyond health and social care, a major seismic event in Australia this year was the referendum on the voice to Parliament. I was personally very disappointed in the result. And as someone leading an organisation that exists to advocate for people to have a voice on the issues that affect them, I have been reflecting on what this means for us into the future. I will continue to share our progress on this work into the future.
  • In that spirit, we’ve also been gathering feedback to help inform a refreshed direction for HCC, drawing on the lessons and the successes of the last 30 years and turning our attention to the future. So that we can set our path for a positive future with regards to the health of Western Australia.

Looking ahead to 2024, plans are already underway for us to celebrate the milestone of 30 years, which we’ll do in April next year. Watch this space for details of how we’ll be doing that.

One of the best bits of my job is working with, and hearing from the many people in our community who commit their time as consumer, carer, community or lived experience representatives to making our health system the best it can be for our whole community. And I know from discussions with many of you that our work as consumer representatives and advocates can sometimes feel hard and yet can also be enormously rewarding.

I also know that for many people, health issues and caring responsibilities don’t stop for the holidays. Particularly as we continue to navigate what it means to live well in this “with COVID” world.

I wish you all time over this holiday period with loved ones, or in nature, or doing other things that you know nurture your health and wellbeing.

I look forward to working with you and standing alongside you as we continue to advocate for the people of Western Australia in regards to health and health care next year and beyond.

COVID health protections in hospitals – return to masks

Health Consumers’ Council welcomes today’s announcement by the WA Department of Health that WA public hospitals will be strengthening health protections in light of an increase in COVID-19 infections.

We know that COVID has remained a concern for medically vulnerable people and the community at large. And with regular media reports of rising infection numbers, and evidence about the impact of Long COVID still emerging, many in the community may be concerned about whether we’re doing enough to manage the risk of serious illness or widespread infection.

HCC will be hosting a Community Conversation for health consumers where attendees will hear directly from Dr Andy Robertson, WA Health’s Chief Health Officer, and get the facts on the latest wave on Tuesday 12 December at 1pm.

Find out more and register at https://events.humanitix.com/community-conversation-covid-update

Children's building blocks with UPDATE COVID19 spelled out - and title of the event

The Voice to Parliament – a health consumer lens

Australians are being asked to go to the polls on October 14th and vote on whether the Constitution should be amended to recognise a First Nations Voice to Parliament.

Health Consumers’ Council hosted a lunchtime discussion on 6 October for people in representative roles as health consumers, carers, people with lived experience or community members to meet and learn about The Voice, and discuss the implications for healthcare and health outcomes.

In this presentation, we review some factual information about The Voice developed by Reconciliation WA and look at some of the expected health impacts for Aboriginal people of The Voice.

 

Expression of Interest – Join the HCC Management Committee (Board)

Management Committee Member (voluntary position) 

Expression of Interest 

The Health Consumers’ Council (WA) Inc. is an independent, not for profit organisation that is passionate about ensuring the consumer is at the heart of our State’s health care system.

Our Vision is for equitable, person-centred, quality healthcare for all Western Australians.

Our Purpose is to increase the capacity of all people to influence the future direction of health care and to make informed choices.

About the role 

This year we have one Management Committee (Board) vacancy. We are interested to hear from people who bring any of the following perspectives or experience:

  • Identify as Aboriginal and Torres Strait Islander
  • Culturally and linguistically diverse background
  • Are under 40 years old
  • Have experience working with or in social enterprises
  • Have experience working with fundraising or philanthropic activities.

Management Committee meetings are usually held monthly, with remote access available.

To be eligible to be a Management Committee member, you need to be an HCC member, or be willing to become a member. You can find out about membership at https://www.hconc.org.au/provider/join-us/

You also need to agree to the Objectives of the Health Consumers’ Council:

  1. Provide information to Consumers to assist them to obtain health care appropriate to their needs
  2. Provide advocacy for Consumers experiencing problems with the health system, particularly the vulnerable and or disadvantaged
  3. Educate Consumers about the health system in Western Australia and new/changing health issues in general
  4. Provide training and support for Consumers to assist them to influence changes in the health system to the benefit of the community
  5. Maximise Consumer participation in decision making in the health system of Western Australia

Download HCC’s rules from the ACNC website https://shorturl.at/ptEHM

Submitting your expression of interest 

Please prepare a cover letter outlining your answers to the following questions:

  • Why would you like to become a member of the HCC Management Committee?
  • How will your skills and experience add to the effectiveness of the HCC Management Committee and the HCC?
  • What has been your involvement in the community over the past five years, including not-for-profit organisations?
  • How do you maintain current knowledge about healthcare delivery and patient experience in WA?

Appointment process 

Confirmation of appointment to the Committee will take place at our Annual General Meeting (AGM) to be held on Tuesday 28 November at 4.30pm (in person in Mount Lawley, or online via Zoom).

In the event that there is more than one nomination, a vote by members will be held at the AGM.

To apply 

Submit your letter, along with a current CV, to:

Glen Knight

HCC Management Committee

g_knight@peoplekind.org.au

The closing date for EOIs to be received is the 23rd October 

Righting injustices won’t be easy – Disability Royal Commission report

People with disability have advocated strongly for this day

The Final Report of the Disability Royal Commission was tabled in Parliament today (Friday 29 September 2023).

  • Click this link to see the Executive Summary of the report.

The report may be difficult to read, as it contains first person accounts of people’s experience of violence, abuse and exploitation.

We encourage people who may be impacted as these stories are reported in the media to reach out to loved ones, networks or professional organisations for support.

In WA there are many organisations who can provide support including:

At Health Consumers’ Council we know that people with disability often have difficult experiences in the health system. We will continue to advocate for more people with disability to be involved in the design, delivery and evaluation of health services to ensure that they meet the needs of the whole community.

Click here to access a range of resources that have been created for people with disabilities in relation to accessing the health system.

By Clare Mullen, Executive Director, September 2023

Consumer and carer representative awarded Honorary Fellowship at RACP

Health Consumers’ Council (HCC) would like to congratulate consumer and carer representative Debra Letica, whose ongoing commitment to improving health services for all West Australians was recently recognised when the Board of the Royal Australasian College of Physicians (RACP) resolved to admit her as an Honorary Fellow of the College.

Deb was a sibling carer for her brother, who was born with a brain injury, and advocated for him to get the best care he could get to help him enjoy the things that brought him joy and happiness. When she came across the opportunity to join the Rockingham Hospital Community Advisory Group as a carer representative she thought “nothing ventured, nothing gained” and put in her application.

From there, Deb joined HCC’s Introduction to Consumer Representation workshop, and then sought out opportunities to continue educating herself on everything health.

“I was pretty nervous way back in those early days. I was not confident as a public speaker, and I must say, a little wary of health professionals, mostly because my interaction as a carer had been anything but pleasant with a few of them. But my confidence grew, the more I joined in with the Rockingham General Hospital Consumer Advisory Group and sat on other committees, I learned a great deal about how the system worked. And I met some really nice people. And they changed my perspective about the health system,” Deb said.

In 2018, Deb became an inaugural member of the Royal Australasian College of Physicians Consumer Advisory Group.

“I became really interested in the training of health professionals, because I didn’t know what it took, what they had to do, to become a health professional. They’ve shared their wisdom and knowledge  with me, and asked me for mine on various committees across the college. They’ve helped me present at the College Congress, which is held every year. I’ve learned an awful lot about the passion health professionals have, the commitment they have to becoming a physician or a specialist. They’re all amazing, incredible, beautiful human beings and what they do, and achieve, leaves me in total awe. It certainly has opened my eyes.”

Deb was recently on a Zoom call as part of a HCC workshop when she received an email from the President of the RACP, advising that the Board had resolved to admit her as an Honorary Fellow of the College.

“I couldn’t quite believe it! I burst into tears, but tears of joy. I’m very honoured and humbled that my volunteer work as a consumer and carer has been recognised in this way. And it’s commendable that the RACP so highly value consumers and carers voices in the training of the physicians and specialists of the future. I think this recognition is having a really positive effect, not only for me, but for many of my consumer and carer colleagues and friends across Australia. It certainly sets the bar for the value and the recognition of our consumer voices.

The fellowship is a very clear example of the value that is placed on consumers and carers lived experience voices. And I know that we have healthcare rights, and we have the national standards, but we have to go beyond that to be kind and seek opportunities to understand how it is for other people working in the system.

I think everyone has a story that can add value, so that we can all learn from and make the system better for the next generation. By this I mean to also include the stories of those working in the system, and how we can work together to improve the system. Wouldn’t it be wonderful if somehow we can create a platform to share our stories, and by that, I mean, all of us, those of us using the system, and those of us working in the system. I really think this would change our hearts and minds and give us a deeper understanding of how things are in each other’s world.

One of the important things for me, is that as consumers, we have to be brave to listen to others, to the stories of those working in the system. Because we are in this together. And we have to be on the same boat rowing the same way.

I strongly think that we need to encourage and support others to be brave enough to get involved. We need to have a more diverse group of people, more diverse voices, sharing their stories – and support from places likes HCC to help everyday people like me to have the courage to be brave enough to take on these opportunities.”

On behalf of all the team at HCC, congratulations Deb – this honour is so deeply deserved. Thank you for your passion and dedication to speaking up for the importance of a kind, patient-centred health care system.

A Tribute to Kate Moore

We recently farewelled one of the most influential people in Australia’s consumer health movement.

Kate Moore was known to many in WA as the Executive Director of the national peak, Consumers Health Forum (CHF), from 1991 until her retirement in 1999.

Michele Kosky, who was the first Executive Director of Health Consumers’ Council, said Kate was a singular woman of integrity and strong values.

“Kate’s leadership at CHF really set the landscape for the health consumer movement over many years. She was generous with her time, strategic in her work, trustworthy and a great believer in the strength of coalitions and collaborations.”

“In my experience with Kate (jokingly called Mission Control in the West), our tiny organisation between the Nullarbor and the Indian Ocean in the 1990s, she always had time to offer quiet advice and sound reasoning…and a good laugh.”

Former HCC Chair Anne McKenzie wrote that Kate “was a softly spoken powerhouse” who understood the complexities of health financing and the relationships between the Commonwealth and the states and territories.

Throughout her career Kate held a range of roles at local and national levels and was a strong advocate for social justice, addressing inequity and putting consumers at the centre of health policy.

Mitch Messer, one of HCC’s first Board Members, said Kate “was a champion of consumer involvement in health”. One of her many roles was as a member, and later Chair, of the ACT’s Health Care Consumers Association, who said “She brought a sophistication to advocacy with CHF and HCCA and was able to use her knowledge and connections to pave the way for consumer perspectives. Kate’s view was that not only do consumers bring an important perspective to policy and decision-making, they are also in a position to put forward an alternate view while Government maintains more neutral ground.”

Kate was guided by her personal values and was a pioneer in the idea of values focused leadership. She was passionately committed to consumer participation in health care and was a mentor and guide to many consumers with a light touch and a ready smile.

At HCC, we feel proud to be able to play a part in this work in WA.

We invite you to read more about Kate’s lasting legacy here and here. Rest in Peace Kate.