Category: Blog

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)

A wild reflection from digital health summit

 

With the Wild Health Summit in Melbourne 18 October 2022, we are inspired by the idea that digital health could improve the patient experience even while the services themselves are quite fragmented. We need to continue to champion consumer voices in this space – too often they can be an after-thought.

We asked one of our consumer representatives, Robert McCormack, if he has any key questions or reflections to bear in mind for this upcoming Wild Health Summit event, having recently attended as a HCC consumer representative at the Digital Health Institute Summit (Perth 2022) held in August at the Perth Convention and Exhibition Centre.

Q: What were your highlights that might be of interest to health consumers?

A: I met a number of healthcare and IT professionals but did not see another health consumer.  However in conversations with these professionals, several times they relayed personal experiences as either patients or as carers.  Nonetheless, there is a case to have more consumers at the table.

Q: With no other consumers, do you have any comment on that – i.e. would it be of interest to consumers in future? Should we be advocating for more consumer places?

A: the need to engage widely with all stakeholders was emphasised by the keynote speaker, and I am of the view that the patient/carer/consumer needs to be seen as the principal stakeholder.

Q: any comment you might have on the value of you being there with a consumer lens?

(Mr McCormack was generous to provide us with a report on his experience at Digital Health Institute Summit (Perth 2022), which is summarised, below…)

Some Key Observations

The participation of over 200 delegates suggests there is substantial interest across the State in the potential benefits that could be delivered from the implementation of a solid digital health strategy.

The delegates comprised a good cross-section of health professionals including nurses, pharmacists, physiotherapists, and general practitioners through to senior executives from WA Health, and IT professionals with only a few health consumers.

The opening address by Simon Millman, the Parliamentary Secretary to the Minister for Health; Mental Health suggests the Western Australian Government has some commitment to digital health as also evident in its budget commitment to the first phase of developing a digital health record.

In conversation, most delegates acknowledged that while there has been some useful progress in rolling out aspects of digital health, considerable work needs to be done to achieve substantial potential benefits. One speaker described the current progress as additive rather than transformative.

Dr Helen Bevan, the keynote speaker, emphasised, with reference to her experience in the English National Health Service, the need to engage fully across the widest net possible of stakeholders to gain acceptance for proposed change, and this engagement needs to be done in the formative stages.

She particularly emphasised the need to identify and engage the key players, the “super-connectors”, in informal networks as well as dealing with the formal networks.

I note this approach contrasts with the experience of many health consumers in that they are too often ignored locally in the early developmental phases of most healthcare projects.

I am of the view that consumers as the clients of healthcare should be the primary stakeholders consulted in any proposed development of initiatives.

The fragmentation of responsibility for health across federal and state governments and the delivery of services across multiple providers presents particular challenges in assembling fragmented data.  While the My Health Record potentially brings data together from a number of providers, the record for each patient is mainly incomplete and may not have up-to-date information.

Hospitals use a myriad of systems that don’t automatically share data although some progress is being made as evident in a presentation by staff from Fiona Stanley Hospital.

The development of artificial intelligence tools is seeing the improved diagnosis and management of healthcare.

For example (of the above), as evident in the Health in a Virtual Environment (HIVE) project at Royal Perth Hospital and research undertaken by the CSIRO in diabetic foot ulcer diagnosis and management.

The need to think beyond the current paradigms in healthcare delivery was highlighted in a presentation on delivering chemotherapy in the home by Lorna Cook Company Director & Co-Founder, View Health Chemo@home.

In a similar vein, it should be noted that COVID has caused a rethink on service delivery models which has seen, for example, the development of telehealth options and electronic prescriptions.

Digital health innovation has the potential to improve the patient experience in booking appointments, such as the Health Engine system developed by Dr Marcus Tan.  In contrast, while the WA Health Department has invested in developing the Manage My Care app and is working on further enhancements to this app, this system is currently of limited use in that not all outpatient appointments are recorded on this system and patients have no opportunity to choose appointment times.

The trade stalls were mainly commercial IT companies who have had experience in developing and implementing systems across healthcare systems.  We can expect some of these companies will have opportunities to roll out digital systems across the WA health service providers.  It will be interesting to see the extent pre-existing systems will be adopted and the degree of customisation of these systems to meet our requirements versus bespoke development of new systems.

Concluding Remarks

While there have been several useful developments in the digital health space,

to realise the substantial benefits of a comprehensive integrated digital health strategy will require wider engagement of the broadest possible group of stakeholders at the earliest stages of the project with a particular focus on consumers/patients as the primary stakeholders together with the substantial investment of resources and talent over a prolonged period.

The Health Consumers Council can potentially play a key role in shaping the digital future of healthcare delivery by providing a broad range of consumer insights required for the critical success of the digital health strategy.

(This article/report is courtesy of Robert McCormack, HCC consumer representative.)

What the HCC Engagement team have been up to in Djilba (August-September) 2022

It’s been a busy few weeks for our team – here’s a selection of some of the meetings and events we’ve been part of…

  • Meeting with the WA Council of Social Services to discuss work happening on partnership in relation to the WA Sustainable Health Review (SHR)
  • Meeting with Helping Minds to discuss shared interests
  • Promoting consumer perspectives as part of the East Metropolitan Health Service Obesity Prevention Strategy Implementation Committee
  • Meeting with East Metropolitan Health Service to discuss ways of getting consumer input to inform plans for a weight management clinic
  • Promoting consumer perspectives as part of the East Metropolitan Health Service Weight Management Clinic model of care project reference group
  • Hosting a community conversation about the WA consultation on Assisted Reproductive Technology and Surrogacy Acts to inform HCC’s submission on this topic
  • Meeting with the consumer organisations in other states and territories to discuss how we can have more of a state consumer voice on national issues – such as primary care reform
  • Meeting with the Department of Health to discuss our new contract arrangements (which will kick in from 1 January 2023)
  • Meeting with the Department of Health to understand the state position on Long COVID
  • Attending the launch of the Consumers of Mental Health WA launch of their new individual advocacy service for people with psycho-social disability
  • Call with Cancer Council WA about running consumer focus groups
  • Taking part in cultural responsiveness training
  • Hosting two consumer forums – funded by the WA Department of Health – on the experience of multicultural men and multicultural people living regionally in relation to cancer care and information
  • Taking part in the Care Opinion national advisory group
  • Meeting with the team at the National Justice Project about the next steps with the Aboriginal Patient Advocacy Training
  • Promoting consumer perspectives at the Emergency Access Reform Program Control Group
  • Delivering our first fully virtual consumer representative training workshop
  • Meeting with the Department of Health to discuss the work on SHR Recommendation 23 in relation to clinical and consumer leadership
  • Meeting with the WA Primary Health Alliance to support consumer involvement in the development of a model of care for chronic heart failure
  • Meeting with the WA Country Health Service to help them access consumer-facing materials about engaging with health services
  • Meeting with the Department of Health about sexual health and blood borne viruses
  • Meeting with Consumer and Community Involvement Program (CCIP) and a consumer leader to discuss opportunities to connect consumers, carers and community members with lived experience of cancer – planning a community conversation in October
  • Meeting with the Department of Health to discuss communities of practice
  • Taking part in an online forum on COVID Antivirals
  • Attending the launch of the refreshed Live Lighter campaign
  • Promoting consumer perspectives in a meeting with the WA Enrolled Nurses Cooperative hosted by Community Skills WA
  • Hosting a community conversation about the reality of “living with COVID” with Professor Grant Waterer
  • Meeting with the Department of Health about their plans to involve consumers in the development of a WA Safety and Quality strategy.
  • Meeting with Community Legal WA and the WA Financial Counsellors Association to discuss shared interests and possible collaboration opportunities
  • Meeting with People With disability WA to discuss the Empowering Health Consumers With Disability training we are running together
  • Attending Clinical Services Redesign Methodology training with other people involved in the Emergency Access Reform program across WA Health
  • Meeting with Asthma Australia to discuss shared interests
  • Hosting a cultural sensitivity training with a private hospital
  • Hosting an online workshop on Acknowledging Country (find out more about these workshops and sign up at https://www.eventbrite.com.au/e/acknowledging-country-tickets-414587019937
  • Presenting – alongside two consumers – on the lived experience of overweight and obesity to 3rd year medical students at Curtin University
  • Meeting with the Department of Health and the WA Primary Health Alliance about the work on the WELL Collaborative (WELL = Weight Education and Lifestyle Leadership)
  • Talking on the ABC Perth morning show about the implications for consumers of the one-off public holidays on 22 September

This is only part of the work HCC does. At the same time, our Advocacy team have been responding to individual consumer enquiries every day providing both “in the moment” support, and also longer term support and advice to consumers who’s enquiries require involvement over a longer period of time.

 

Engagement Officer, L4 – full-time

Can you help us build a social movement in health?

At Health Consumers’ Council, we believe in people power. Through our engagement and partnerships work, we are building a social movement in health – where the people who use health and healthcare services, and the people who work in them, can work together to identify priorities for improvement and make positive and lasting change.

We’re looking for a can-do person to join our team and help us extend our reach to more people in the community who use health and social care services, as well as reaching more of the people who work in them.

Health Consumers’ Council WA

The Health Consumers’ Council of WA (HCC) is an independent community-based organisation which was established in 1994, representing the consumer’s voice in health policy, planning, research, and service delivery. We stand for equitable, person-centred, quality healthcare for all West Australians.

Three people sitting at a desk looking towards the front of the room. In the background is an Aboriginal flag and a Torres Strait Islander Flag, and a whiteboard with post-it notes

About the Role

This role is based in the Engagement team and is for an initial period of up to 2 years with the possibility of extension. As well as managing your own projects and activities, you will also provide support to other members of the Engagement team including the Aboriginal Engagement Coordinator, the Cultural Diversity Engagement Coordinator, the Marketing and Communications Coordinator and the Deputy Director.

This is a full-time role based between our offices in Mount Lawley and your home. For the right person, we may consider part-time options, but ideally we’re looking for someone who can be available to work 5 days/week.

What We Offer

  •  A friendly and supportive team that’s making a tangible difference in the community
  • A competitive not-for-profit annual base salary – Level 4 Social Community Home care and Disability Award ($39.26/hour + super)
  • Salary sacrifices up to $15,900 per annum
  • An engaging and flexible working environment
  • The opportunity to work on a wide range of projects and to learn practical skills on the job.

What you’ll be doing

This is a mixed role with lots of variety so you’ll get the chance to work on a range of projects and activities within the Engagement team’s portfolio including:

  • Delivering training and presentations to a range of groups including consumers, carers, community members, people with lived experience and staff working in government, health care and social care
  • Planning, organising and delivering events and workshops – including virtual, face-to-face and hybrid (both virtual and face-to-face)
  • Analysing feedback from events and workshops and creating reports to share this information with a range of stakeholders
  • General engagement project coordination including
  • preparing, monitoring and reporting on project plans
  • liaising with project stakeholders to ensure tasks and deliverables are achieved in line with project plans
  • monitoring and reporting on project budgets
  • responding to enquiries from a wide range of stakeholders about engagement and partnership practices and programs, including providing advice
  • creating and distributing engaging content for a range of platforms including social media, website, email, MS Teams and publications
  • helping to recruit and support volunteers to support HCC’s activities.

What you’ll need to succeed in this role:

  • Excellent literacy and writing skills and strong communication and interpersonal skills
  • Experience in a people-facing role such as customer service or stakeholder engagement and a love of connecting with people
  • Experience in organising meetings, workshops or events
  • Collaborative working style with an ability and willingness to muck in with other team activities as required
  • Be able to work autonomously and within deadlines, including managing a number of projects at the same time
  • Proactive, reliable and flexible attitude and comfortable working in a fast-paced adaptive environment
  • Highly proficient general office IT skills for day to day office activities including the ability to quickly learn to become very comfortable using MS Word, MS Teams and MS Powerpoint – and using MS Excel for organising and sorting data – and comfortable learning new IT skills quickly and with minimal input as required

If you’ve had experience of stakeholder engagement or working with volunteers that would be great. And if you have other skills and experience that you think makes you a great fit for this role, please tell about those too!

Diversity and inclusion

At Health Consumers’ Council we know that strength comes from diverse perspectives being at the table. If you require any adjustments to submit your application, we invite you to get in touch with Clare Mullen via email clare.mullen@hconc.org.au or call reception on 08 9221 3422.

Please read the attached position description for more details – please refer to the criteria in your application.

To apply for this role, please send us an email (to info@hconc.org.au) and a copy of your resume and tell us:

  • What is it about your professional or life experience that makes you a good fit for this role? (Please make it clear how these relate to the tasks and criteria in the position description in your response.)
  • Why do you want this position?
  • How do you see yourself helping Health Consumers’ Council to deliver on our plans?
  • What do you look for in a working environment that can help you thrive?

Next Steps

To be considered for this opportunity please email applications to info@hconc.org.au by no later than 9am on Tuesday 27 September 2022.

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)

 

Position statement – Roe vs Wade decision in the US

The Health Consumers’ Council of WA unequivocally stands for the rights of all people to access legal, safe, timely and compassionate abortion care as essential healthcare.

Today we join many people and organisations across Australia and add our signature to the Australia position statement on the Roe v Wade decision in the US published by Children by Choice.

We welcome the statement by the WA Minister for Health in support of reproductive rights and equitable access to abortion for women and people with uteruses across Australia. We support the WA safe access zone legislation that protects the rights of people accessing abortions to do so safely and free from harassment or intimidation.

However, we know that accessing free, high quality, comprehensive abortion care in WA can be difficult for some people. Factors including where someone lives, their financial situation, the availability of clear, accessible and culturally appropriate health information, and the availability and affordability of healthcare, can all impact on someone’s ability to access the care they need. We also know from MSI Australia that First Nations’ peoples, trans and gender diverse peoples, members of migrant and refugee communities, people on temporary visas, and people with disabilities can face additional barriers to abortion care that are further impacted by age, economic status, stigma and discrimination.

We will continue to speak up – alongside our partners in WA – for improved, ongoing, timely and affordable access to these vital health services for all.

Health Consumers’ Council WA provides advocacy support to people accessing health services in WA. See https://www.hconc.org.au/individual-advocacy/

 

Relationships and compassion essential for great care

By Clare Mullen, A/Executive Director, 20/03/22

It’s all about relationships…

This week I was part of several conversations in meetings where I found myself saying the same thing:

No matter how good each bit of the system is, they’re only as good as the relationships between the different parts of the system that make up the whole.

In publicly funded services, there is a strong commitment to high quality services. But what is sometimes (even often) missing is an understanding that those services are often only one part of a person’s experience.

I had been reminded about this by a presentation by Fiona McKenzie of Orange Compass in a recent event hosted by the Obesity Collective. (You can watch the video online here)A screenshot of a powerpoint slide showing that relationships that join different elements of a system are important to how that systems functions

One of the challenges of publicly funded services is that there is often a preference for funding activities that a politician might be able to point to at a critical point in the election cycle. The almost hidden work of building and investing in trusted relationships between services doesn’t necessarily fit that criteria. And the more visible work – like networks and forums and other events – can sometimes be misunderstood as not being essential work, because it’s not client-facing. And yet, it’s critical that services are joined up because the person that’s experiencing all those systems ideally lives their life in a joined up way – and will benefit if those services are integrated.

The best thing I’ve read on this is Radical Help by Hilary Cottam – she describes a number of truly innovative ways of designing services with the person at the centre.

Radical is the word. And if we are to get truly person-centred services, we will need leaders to step up and take some radical action.

Compassion begets compassion

This week I also had the chance to listen in to a presentation by Erin Cotter-Smith – about the importance of recognising and addressing the impact of vicarious trauma on people who witness other people’s trauma. She shared some of her own experiences and created space for care givers to learn more about things that might help.

It was a timely reminder about the person on the other end of “person-centred” care.

Healthcare professionals around the world have been under significant pressure with the added burden of responding to COVID-19 for over 2 years. Even here in Western Australia, while we are only now dealing with the reality of living with COVID, we’ve all been on high alert for its arrival at any time.

In WA the Minister for Health’s published survey from August 2021, only 47% of staff across WA Health services agree that “I believe my organisation cares about my health and wellbeing” – to be clear, that’s less than 1 in 2 of the people who work in these services. And only 57% believe they are “given the support [they] need to deliver a high level of service to [their] patients/clients/customers”.

As someone with a strong interest in the care that patients/clients/customers experience, I’m hoping that someone in WA Health is taking real practical action to listen to staff and implement some new approaches that will see those numbers rise significantly.

Putting the public back in public health

By Clare Mullen, A/Executive Director, 07/03/22

World Obesity Day 2022 – everybody needs to act!

World Obesity Day is marked on 4 March each year. The theme this year is “everybody needs to act”.

At Health Consumers’ Council (HCC) we’re acting by taking on the responsibility for hosting the WELL Collaborative (Weight Education and Lifestyle Leadership) – see below.

World Obesity Day is… complicated.

I know some people see it as a day when people in larger bodies are demonised. They utterly reject the term obesity and question the science that’s referred to as showing a link between increased weight and poorer health outcomes.

I have concerns about these too.

But I also know that many people in the community have negative health experiences relating to obesity. Whether that’s concerns about weight related health issues, or the mental health impacts of weight stigma and bias.

And so, through our work at HCC, we put forward the wide range of consumer perspectives that we’ve heard, while also going where there is political will, and some resources – and for now, that is obesity. (See below for more information about how we’re trying to change the conversation through promoting consumer and lived experience voices on this topic…)

I had the chance to take part in a couple of events last week to mark World Obesity Day. There is so much great work happening in this area but I’m particularly excited to see the momentum and recognition building for the need for diverse lived experience voices to be leading this work.

A couple of organisations that are worth following on social media, or subscribing to their mailing lists:

  • Australia: the Weight Issues Network. This is a group led by and for people with lived experience of weight issues. They run regular community conversations where members can learn about various aspects of the science of obesity – as well as advocating for more understanding of the personal aspects – find out more at www.auswin.org.au
  • Europe: the European Coalition for People living with Obesity. This group works collaboratively across Europe to improve the lives of people who are living with and are affected by the chronic disease of obesity through advocacy, policy and education. They run regular “patient lounge” discussions with consumers and researchers – find out more at https://eurobesity.org/

I really believe that only by raising lived experience voices in this space will we see real lasting positive change.

But it can be difficult to raise your head above the parapet in this space as a person with lived experience – particularly for people impacted by severe obesity.

We’ve all been so immersed in the idea that our weight is “our fault” that body shaming and judgement are practically sanctioned by some public health campaigns (grabbable gut anyone?).

And so health services and systems who want to hear more lived experience perspectives have to collectively invest in supporting people to develop their confidence to share their personal experiences in public settings for the greater good, and in creating safe places for those conversations to take place.

We’re lucky in Western Australia that the WA Department of Health and the WA Primary Health Alliance have recognised this and continue to support WA consumers to be heard on this topic.

Putting the public back in public health

I first heard the phrase “Putting the public back in public health” in a WA Department of Health publication, led by Professor Tarun Weeramanthri when he was the Chief Health Officer there.

It has stuck with me since. I think it’s because I see that so many of the elements that impact on our health and wellbeing are factors in the realm of our social worlds, rather than in the realm of our clinical experience.

This idea sharpened considerably for me when I took on HCC’s involvement in what was then called “The Obesity Collaborative – Partners in Change” project. A forward thinking team at the WA Department of Health and the WA Primary Health Alliance gave HCC a small grant to gather consumer insights so that work to address the health impacts of obesity was grounded in the experience of people with lived experience.

That work led to a survey with 750 responses, 25 first-person accounts, and two videos featuring consumers sharing their perspectives – perspectives that were shared at the two Summits on the subject in 2018. (You can see that work here.) That work shaped the development of the WA Healthy Weight Action Plan.

What emerged from all the stories and feedback people shared was:

  • people’s experiences relating to weight and health vary widely. This is backed up by the academic literature which highlights the heterogeneity of people’s experiences of obesity.
  • weight bias and stigma is a huge public health issue that is under-recognised by health professionals and public health teams. Academic evidence suggests that in some cases, the health impact of weight stigma can be more harmful than the health impact related to weight.
  • that many of things that people turned to when seeking to address this issue were non-clinical. One hypothesis for this that diet culture needs us all to feel individually responsible for our weight so that we will buy programs and products that promise the holy grail of long-term weight loss.

Another personal observation for me was the role that our current economic model plays in our health. Whether it’s because there is limited regulation of the food industry (because #profit), or because people living on no/low-incomes are dealing with a whole range of issues including how to make ends meet, or because we are encouraged to believe we should be so committed to our jobs that we’d rather miss a meal than an important meeting – the economic environment has a huge impact on our health and health inequity.

Partnering with consumers – in implementing positive change

The value of lived experience perspectives in the Healthy Weight Action Plan was recognised as essential and another grant from the Department of Health enabled HCC to gather more consumer insights to support the implementation of the Plan. (Again, kudos to the Department of Health for their forward thinking approach. Too often “consumer engagement” stops once the plan is published.)

That grant enabled HCC to gather insights from people with diverse perspectives on the topic including Aboriginal people, people from culturally and linguistically diverse communities, men, young people, and people with disability. It also enabled us to ensure that consumer perspectives shaped the critical activities being implemented as part of the plan. In this way, consumers or consumer perspectives were involved as projects were shaped and developed including:

  • Scoping a new proof of concept program offering virtual support to consumers who were using evidence-based very low calorie diet products
  • Scoping commissioning standards for DoH and WAPHA to use when commissioning services in this area
  • Scoping and refining the collaborative approach to addressing this issue in WA ↓↓

Introducing the WA WELL Collaborative!

The WA WELL Collaborative (WELL = weight education and lifestyle leadership) is the culmination of many hours of work by many teams of people across the community and the health sector.

The WELL Collaborative is a network where everyone with an interest in addressing the health impacts of weight, overweight, and obesity can come together. Whether that’s to find information about existing services, where consumers can be connected with clinicians and researchers who are working on new concepts, or to share challenges and wins about working in this very complex field.

One main way that people can access the network is through our freshly launched website:

You can sign up there to receive regular updates about Collaborative activities. The website is a living site and will be updated regularly.

HCC, WA Department of Health and WA Primary Health Alliance – taking action

I’m delighted to say that HCC has been given a grant by the WA Department of Health and the WA Primary Health Alliance to enable us to continue to ensure that lived experience voices continue to shape and drive this work. Part of our role is to host the backbone function of the WELL Collaborative. In practice this means hosting different networks, organising events, and managing the website.

The first thing I’m really proud of is the name – originally in the Plan this group was going to be the Obesity Collaborative. But since we started talking to consumers, it was clear that the term “obesity” was not one they connected with. It has become widely understood in the community as a pejorative term – and so, unsurprisingly, many consumers aren’t drawn to it. And so when working on a brand and name for the network, we made sure that was clear to the team developing those.

(Note of caution… we know that some consumers are very comfortable with the term and have questioned how other people like them – who are seeking help for the health impacts of obesity – will find their way to the website. We are addressing that through the data we use for search engine optimisation and our communications with other partners.)

The other ways that consumers have shaped this network include the imagery that has been used, and the focus on weight stigma.

Representation matters

We regularly hear from consumers in larger bodies that they are tired of never seeing any positive images when discussing weight and health. They want to see themselves reflected in images that reflect their lives – which are not all doom and gloom. So we connected the website team with a number of the image libraries that have been curated by various groups around the world.

Weight stigma – a major public health issue

A major finding from our work with consumers was the impact that shame, embarrassment and stigma has on people’s health. Whether that’s explicit bias being expressed by health professionals, or implicit in the body language; or it might also be internalised weight stigma – where we’ve been brought up to believe (incorrectly) that we are entirely responsible for our weight and so if we aren’t able to shape our bodies the way we want to, then it is a personal failing. All of these can input on our health – if we don’t receive the correct healthcare advice and treatment because of incorrect assumptions based on our size; if we don’t reach out for treatment because we’re embarrassed our efforts haven’t worked, or if we cope with body shaming by opting for less healthy behaviours.

HCC will be doing a lot more on this topic in the coming months – so watch this space.

But for now, check out this video where consumers talk about their own experiences of weight stigma in health services, and find out what you can do to become aware of any unintentional bias you may hold at www.hconc.org.au/end-weight-stigma

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?
    • A team of researchers at UWA and WA Department of Health are researching the information needs of people who are diagnosed with cancer. This is part of the WA Cancer Plan implementation. This survey closes on 28 February. Please share it widely
    • https://mdhs-redcap.meddent.uwa.edu.au/fmdhs/surveys/?s=P9RLWRN39K

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