February 2024 - Health Consumers' Council WA

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

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

Month: February 2024

Digital Health and the Electronic Medical Record – February 2024 Update