Category: Community Consultation

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)

Consumer update on Sustainable Health Review workforce recommendations

Sustainable Health Review – update on health workforce issues

The Sustainable Health Review is a wide reaching and ambitious reform program. After an extensive consultation process the Review was published in 2019 and includes 30 recommendations, organised into eight enduring strategies.

Some of the work was paused as the health system responded to the COVID pandemic, but as we move towards living with COVID we’re starting to see action and progress on a number of the recommendations. You can see more about HCC’s involvement in this work at https://www.hconc.org.au/what-we-do/policy-development/sustainable-health-review-consumer-view/

Issues relating to the workforce and culture of the health system were included in the Review, and there are five recommendations that cover these issues.

Find out more about health workforce issues

Health Consumers’ Council hosted a consumer information session to share what we know about work that is happening as part of the Sustainable Health Review on workforce issues.

  • Click here to see the slides from that information session
  • Click here to view the Zoom recording of that information session

Consumers have their say

Health Consumers’ Council hosted two consumer consultations for the Department of Health on one of the recommendations on this topic on 26 July 2022.

Recommendation 26 – Build capability in workforce planning and formally partner with universities, vocational training institutes and professional colleges to shape the skills and curriculum to develop the health and social care workforce of the future.

You can view the post-its that were created as part of these online discussions

Session 1 – focus on regional perspectives

Click the links below to see the dot points for these topics

 

Session 2 – focus on metro perspectives

Click the links below to see the dot points for these topics

 

To be added to a mailing list to be kept informed about this work, contact Clare Mullen clare.mullen@hconc.org.au

(Last updated 29/07/22)

 

Health Services Act – Independent Governance Review

How does the way the WA Health system is managed impact consumers, carers and the community?

The Health Services Act 2016 introduced a new governance structure (how the health system is run and managed) to the WA Health system. The East, North, South, Country and Child and Adolescent Health Services (HSPs) as well as PathWest were created. An Independent Review into that governance structure started in April 2022.

Click here to look at a PowerPoint we put together on the Review Click here to watch the presentation with the slides

Report published

The Report of the Review was tabled in Parliament on 25 October 2022. You can read HCC’s take on the Report after a rapid review at this post https://www.hconc.org.au/rapid-review-of-the-independent-governance-review-with-a-consumer-lived-experience-community-lens/

You can review the report, and the submissions received at https://ww2.health.wa.gov.au/About-us/Department-of-Health/Independent-Governance-Review-of-the-Health-Services-Act-2016

We will continue to review this document in detail. We’re holding a rapid consumer/carer/lived experience leader briefing session on the report on Tuesday 1 November, 12pm – 1.30pm. You can register to attend this session at https://www.eventbrite.com.au/e/independent-governance-review-report-hcc-info-session-tickets-451041014817  

Consumer involvement in the consultation

Members of the Independent Review joined two consultation sessions held online and in person on Wednesday 4th May. At the sessions we focused the feedback sessions on the following:

  • consumer involvement
  • patient experience
  • emergency management
  • prevention and care in the community
Click here to read the report from the consumer workshops with the Review Panel

We also used that to inform our submission.

Click here to read HCC’s submission to the Review

The public consultation closed on 20 May. We know a number of people made their own submissions to the Review. We look forward to being able to share next steps with you as we find out about them.

Cosmetic Surgery – Survey closing 1 April

Currently, any medical practitioner in Australia may call themselves a surgeon or cosmetic surgeon, without completing specialist surgical training. Your feedback will help determine if this needs to change. If you have had surgery, particularly a cosmetic surgical procedure, please share your experiences in this anonymous survey.

Click here to complete the survey – it takes about 10 mins – closes 1 April 2022

This is a partnership project with the Health Issues Centre Victoria and the Health Ministers Meeting.

 

 

Health consumer stories driving positive change

COVID, consenting to medical research, cancer information, and promoting health

The first few weeks of 2022 have been a busy time in health in WA…

Preparing for and living with COVID

Those weeks have been a time for everyone at Health Consumers’ Council of intense listening to, sharing and advocating for more consumer voices in the planning and preparing the health system’s response to preparing to live with COVID.

In that time we’ve held three discussions with consumer leaders and representatives across WA to hear what was on people’s minds as they were preparing themselves, their families and their communities for living with COVID.

Key messages we heard were that there was a sense of fear in some parts of the community as people navigate the shift from “COVID is to be avoided at all costs” to “we are living with COVID”. We also heard that there was a lack of information for health consumers who have underlying conditions, or who are immunocompromised, and need to make additional preparations. And the third strong message was people’s concerns were not just for their health, but the social implications of COVID. For example, who can people rely on if they’re a carer and they get sick? How do people get access to care if they’re unable to leave the house? What should they be doing to make sure they can get access to the healthcare they need – and stay safe?

And finally, we heard a strong message from health consumers about the opportunity to help people feel more empowered and confident in their ability to prepare.

We’ve shared these concerns with health leaders including the Minister for Health, health service Chief Executives and the teams leading the COVID response at the WA Health Department and the WA Primary Health Alliance.

By the end of last week, we’d seen a couple of significant changes – South Metropolitan Health Service had published information on their websites for people who are immunocompromised, and some patients who are at a higher risk of developing severe disease if they contract COVID are receiving calls from their specialists to help them work out how they can prepare themselves and their families.

We also were able to get information about the new COVID Care At Home program out to over 110 people who registered for a community conversation with Dr Robyn Lawrence from the Health Department, as well as getting into out to the broader community via a mention in Renee Gardiner’s column in The West.

The next focus will be to keep getting the message out into the community – particularly to those groups where mainstream communication methods like websites and news media in English are not widely used.

The other focus will be on encouraging other people in the community to play their part in getting information out to the people who need it and to look out for their neighbours or family members who might value a bit of support. As one consumer who was quoted in the article in The West said “We are all in the same storm but the boats are so different it’s hard to hang out in the tinny with a hole in when others are in their yacht.”

www.hconc.org.au/issues/covid-19

https://www.healthywa.wa.gov.au/Articles/A_E/Coronavirus/Managing-COVID19-at-home-and-in-the-community/WA-COVID-Care-at-Home

And it’s not all about COVID… have your say!

As we finalise our preparations for living with COVID it’s important to remember it’s not the only health issue that’s important for the WA community. There are a couple of key consultations that are looking for consumer input:

  • What are your views about the issue of giving consent to treatment – particularly if you’re incapacitated?
    • The Guardianship and Administration Act Part 9E came into existence on 7 April 2020 “to enable medical research to be carried out in respect of persons who do not have the ability to consent  to it.” While it might seem a bit dry, it could make the difference between someone accessing cutting edge treatment that is part of a research program or not.
    • Find out more and complete the short survey by 25 February at https://www.surveymonkey.com/r/GuardianshipAdmin9E
  • Have you or someone you know had cancer? What information was, or would have been, most helpful?

And finally – towards a healthier WA

This month we also made time to respond to the WA Department of Health’s consultation on the WA Health Promotion Strategic Framework. We called for a stronger focus on health inequities, the recognition of early childhood trauma on our longer term health, and encouraged a bold vision for a healthier WA that the whole community can buy into.

You can read our submission here https://www.hconc.org.au/wp-content/uploads/2022/02/WA_Health-Promo-Strategic-Framework-HCC-response-040222.pdf

Clare Mullen, A/Executive Director
February 2022

Guardianship Act and Medical Research Consultation – what do you think?

The Guardianship and Administration Act Part 9E came into existence on 7 April 2020 “to enable medical research to be carried out in respect of persons who do not have the ability to consent  to it.” (From the Review’s Background Paper – click here to read)
The Review aims to review the operation and effectiveness of this amendment. While this is a complex and potentially dry topic to contend with, this act directly impacts West Australians who could be eligible to be included in health research. The Health Consumers’ Council and the Consumer and Community Involvement Program are therefore collaborating undertake a joint survey to provide a response to the Review. We invite you to respond via this survey and your responses will be included in our joint submission.
It’s important that your voice is heard in a space that has so far been driven by researchers and Government.
Or scan the code below: DEADLINE 25th FEBRUARY
You are also able to provide your own response Send your written submission by email or post (email is preferred) to: legpolicy@justice.wa.gov.au
Mail: Review of Part 9E Guardianship and Administration Act 1990
Strategic Reform Department of Justice
GPO Box F317 PERTH WA 6841
The report on the review will be tabled in Parliament by the Attorney General and may contain references to submissions received during the consultation process, including submitter details or content. If you would like your submission to be anonymous you will need to note this in your submission.
Pip Brennan, HCC A/Deputy Director – pip.brennan@hconc.org.au
Deb Langridge, CCIP Program Director – debra.langridge@uwa.edu.au

Out of Pocket Medical Costs Finder tool

The Federal Department of Health are excited to invite you to attend the upcoming webinar about their initiative to reduce consumers’ out-of-pocket medical costs through the upcoming enhancements to the Medical Costs Finder. This is an existing website where users can discover better cost information for common non-GP medical specialist services across Australia. It is being improved and enhanced through this project.

Date: Tuesday, 17 August 2021
Time: 12:30 PM – 1:30 PM AEST (online) 10.30-11.30 AM AWST
Cost: Free

To RSVP email OOPTransparency@health.gov.au by Friday, 13 August 2021, they will then share the webinar link with you.

Background

The Medical Costs Finder website provides general guidance on the costs of common specialist services by location. It is an initiative to address costs transparency and mitigate ‘bill shock’ from unexpected out-of-pocket medical expenses, by helping consumers better understand the fees associated with services commonly provided by medical specialists earlier in their health journeys.

Currently, the website shows general information on typical costs for common services both in and out of hospital, with 1,100 specialist treatments currently listed. The Federal Department of Health are working to enhance the website so specialists will be able to add their individual fees for common medical procedures and their arrangements with different private health insurers.

The enhancements to the Medical Costs Finder will provide consumers and referring doctors with greater information and choice when deciding on a medical specialist.

The upcoming one-hour webinar will take you through the proposed enhancements to the Medical Costs Finder and allow the opportunity for you to have any questions answered. If you have any questions, please do not hesitate to contact them via email at: OOPTransparency@health.gov.au