Tag: Health

Health consumers’ feedback on digital health “Future for healthcare in Australia…” workshop

 

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.”

 

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Follow our social media platforms for ongoing commentary and contributions from our consumer representatives and the HCC team.

Connecting and communicating consumer perspectives on cancer care in WA

 

Has cancer affected your life – currently or in the past? A desire to connect with others who have similar lived experiences is the drive behind the upcoming community conversation welcoming consumers affected by cancer in WA. Health consumers’, carers, family, and community are invited to join “Connecting and communicating consumer perspectives on cancer care in WA“.

Be part of the conversation to discuss progress on the 2020-25 WA Cancer Plan. Discuss opportunities for future consumer and community connections.

Date and time

About this event

The WA Cancer Plan guides cancer care in WA: find out about progress on the 2020-25 plan and discuss opportunities for future consumer and community connections

Health Consumers’ Council (HCC) WA and the Consumer and Community Involvement Program (CCIP) are hosting this community conversation for people with experience of cancer – either for themselves, or for a loved one.

In this session, consumer representative Susannah Morris, the HCC WA consumer representative in cancer involved in work relating to the development and now implementation of the WA State Cancer Plan, will give an update on work so far as background for the conversation. Cancer care is delivered in the states and so state plans provide important context that guides care and affects consumer experiences and outcomes. Unlike some other jurisdictions, WA does not have a readily identifiable network of cancer consumers: we are fragmented between our cancer types and our treating locations and so this community conversation provides a space for us to come together.

This will be an opportunity for attendees to discuss their interest in people with experience of cancer in WA connecting with each other in order to influence the scope, design and delivery of health services and health research in relation to cancer and survivorship.

(NB This information session is being hosted independently by HCC and the CCIP to provide an opportunity for people with experience of cancer to connect with each other and learn about work relating to cancer care and services in WA. This is not a Department of Health event.)

This conversation will be held online, via Zoom – details will be sent out in the week before the session.

 

About the organisers

We are (Health Consumers’ Council WA) an independent charity that exists to support and promote consumer, carer and community perspectives in the WA health system.

The Consumer and Community Involvement Program (CCI Program) is an activity of the Western Australian Health Translation Network (WAHTN). The CCI Program (CCIP) supports consumers, community members and researchers to work in partnership to make decisions about health research priorities, policy and practice with the aim of improving health outcomes and ensuring community involvement becomes standard practice.

BACKGROUND: Cancer Care and the WA Cancer Plan, launched 2020

The WA Cancer Plan was released in February 2020 setting out the next five years of strategy in relation to cancer services. This work was undertaken by the WA Department of Health, and the Health Consumers’ Council supported the project through running a community survey and developing consumer videos reflecting consumer patient journey experiences. A summary of survey results is available here. The launch event featured a moving and articulate presentation from Advisory Group member Susannah Morris, who ensured the consumer voice was at the heart of the plan as much as possible.

(An abridged version of Susannah’s speech is in Health Matters (pages 10-11: March 2020 issue) on the Health Consumers’ Council (WA) website, titled “A new plan for cancer
care in WA“)

REGISTER FOR THE COMMUNITY CONVERSATION HERE:

https://bit.ly/WA-Cancer-Plan-Community-Conversation-Consumer-Perspectives

(LinkedIn: for Dr Susannah Morris)

Bright Future for ‘Let’s Talk Culture’ Series

The future of ‘Let’s Talk Culture’ seminar series looked bleak after the closure of the Transcultural Mental Health Service. With the closure WA looked set to lose the first-rate seminar series. However, Health Consumers’ Council (HCC) are pleased to announce we have won a contract to coordinate three ‘Let’s Talk Culture’ seminars over 12 months!

What is Let’s Talk Culture?

The ‘Let’s Talk Culture’ seminars played an integral role in educating service providers about working cross culturally, specifically in mental health. Mental health is perceived quite differently from one culture to another. For services to deliver effective treatment there are essential aspects which need to be understood.

Let’s Talk Culture Background

The ‘Let’s Talk Culture’ (LTC) seminar series aims to assist mental health professionals to work in a culturally responsive way with clients from ethnically diverse backgrounds. These seminars, held three times a year, “(were jointly organised by the WA Mental Health Commission, the Transcultural Mental Health Service at Royal Perth Hospital; and, the Cultural Diversity Unit of the Chronic Disease Prevention Directorate at the Department of Health). Commenced in 2009, the LTC series ended in 2016 with the aforementioned closure.

The series “developed a level of unprecedented popularity and following across Western Australia’s service providers, policy makers, researchers, consumers and carers who have a stake and/or interest in transcultural mental health issues.  All seminars were typically booked out to full seating capacity (~ 240).   Topics that have been covered range from Spirituality, Culture and Mental health, Men, Culture and Mental health to the most recent, Alcohol, Drugs, Culture and Mental Health. (Mental Health in Multicultural Australia (MHIMA)

MHIMA is funded by Mental Health Australia and appears to be in some jeopardy regarding future directions; unfortunately this seems to be a common problem with all things multicultural at present.

Future of Let’s Talk Culture

Taking on the ‘Let’s Talk Culture’ series is a great privilege and we hope the wonderful people involved in initiating and developing the series will continue to be involved. HCC will be working in partnership with the Mental Health Commission and the Cultural Diversity Unit of the Chronic Disease Prevention Directorate at the Department of Health. Keep an eye out for more details, which will be available in the coming months on HCC’s website and social media channels.

Louise Ford | Consumer and Community Engagement Manager