Month: October 2022

Rapid review of the Independent Governance Review with a consumer/lived experience/community lens 

The report of the Independent Governance Review Panel has been noted by Cabinet and was presented to Parliament on 25 October 2022. You can read the report and the public submissions online at https://ww2.health.wa.gov.au/About-us/Department-of-Health/Independent-Governance-Review-of-the-Health-Services-Act-2016

At Health Consumers’ Council we were proactive at promoting this Review as an opportunity to address some of the high-level issues experienced by consumers, people with lived experience, carers and family members. 

The report is the result of months of detailed work and will take us some time to go through in detail. We understand there will be much work required for the proposals contained in the report to be actioned. We’re sharing our rapid reflections on the report at this stage in the spirit of collaboration and shared purpose. 

Overview 

From HCC’s initial reading, we see that there is much to be welcomed in the report – and some things to question further before they progress to implementation. 

 Great to see proposed: 

  • Act to be changed to require involvement of consumers on Health Service Provider (HSP) Boards, including Aboriginal people and people with mental health experience 
  • The Minister for Health is to develop a long-term health strategy 
  • A proposal that governance should evolve so that collaboration, information sharing and networking are the norm 
  • Consumers should be recognised as partners in systemwide health strategies and development of local services 
  • Establishment of collective leadership forums (consumers involved in the “advisory” forum) 
  • That the Minister for Health will develop a legislated code for consumer engagement and partnership 
  • A stronger focus on Aboriginal health and the inclusion of the Aboriginal Health Council of WA in the collaborative leadership structures of the system 
  • Refreshed role for Clinical Senate and clinical networks 
  • Creation of three commissioning authorities (north, south and east) at arms-length from HSPs – in collaboration with other commissioning bodies, including Commonwealth, National Disability Insurance Agency and local aged care authorities 
  • All data to be shared openly and transparently across DoH and HSPs unless there is a reason not to do so 
  • Public reporting of performance dashboards but… 
  • More transparent public reporting was also proposed in the Sustainable Health Review but so far hasn’t been fully implemented from that program of work 
  • Under workforce proposals it includes the development of patient-oriented roles to work alongside clinical roles and support consumer engagement and system navigation 
  • The inclusion of consumers and Aboriginal health services in the design of emergency responses including any rapid design and mobilisation of new service models. 

 More information needed/questions to be asked 

  • It is proposed that the Department of Health (DoH) provide more clear guardrails to HSPs about where HSPs do and don’t have local discretion in regard to systemwide policies. We hope this won’t mean that policy officers in DoH – many of whom have no or little experience of working in frontline clinical settings – will develop policy that HSPs will then be required to implement. 
  • Change in role for the Mental Health Commission – from commissioning to oversight. 
  • While the report signals a shift in culture from competitive to collaborative, it is silent on the mechanisms for this to be achieved. As this isn’t something that will “just happen”, we believe it needs some focused attention and resources on how this shift will occur. 
  • The report refers to building the DoH’s capability to develop major health projects – we’d like to know that this will include senior consumer involvement. We see value in a consumer lens being applied before anything progresses to procurement and being locked into contracts. 
  • It refers to an ICT Executive Board and a Digital Health Reference Group – it refers to a range of stakeholders, but no mention of consumers yet. We’d advocate for someone with a consumer lens in these discussions, noting that they would also have to have strong technical understanding. 
  • On p23, it’s noted that more training is needed on how to engage with consumers. We note that this was also a recommendation (Rec 12) for Boards in the Hugo Mascie Taylor report into the safety and quality of the system published in July 2017, but we’re not aware of any such training having taken place. What will be different to ensure these recommendations are fully progressed, and publicly reported on? 

 Opportunity missed? 

  • The report does not seem to require that DoH involve consumers/carers at the highest level of DoH governance. This is very disappointing and at odds with references elsewhere to the importance of consumer/carer/community involvement in systemwide strategic planning and discussions. For example, the MHC has had consumers and carers involved at their highest levels of governance for some time – including sitting alongside Health Service Provider Chief Executives at the Mental Health Executive Committee – but there is no sign of this being suggested for DoH. 

We will continue to review this document in detail and will be 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  

We will also reach out to the Review team to see if they will be organising any targeted briefing sessions. 

Clare Mullen, 31 October 2022 

Consumer/Lived Experience Conference report – International Congress on Obesity 2022

Report by Clare Mullen, Health Consumers’ Council WA

In October 2022, over 1,000 people were in Melbourne to participate in the International Congress on Obesity.

I had the opportunity to attend as a member of the Weight Issues Network (WIN) as a Lived Experience speaker, as well as through my roles with Health Consumers’ Council WA, The WELL Collaborative and the Obesity Collective. My attendance was part funded by WIN (thanks to support from the ICO organisers) and part by HCC, through my work on the WELL Collaborative, that’s funded by WAPHA and the Department of Health.

There were three other people from WIN who attended as Lived Experience speakers. Dr Nic Kormas, also on the WIN Board as a clinician, was attending too.

There were three main streams of content:

  • Basic research[1]
  • Clinical – looking at treatment and care
  • Public health – looking primarily at prevention options

There were also a number of cross-cutting sessions – where people with perspectives from each of these streams all presented together. Apparently this is not very common – which I found surprising. You can see the program for the event at https://www.icocongress.org/programme/programme-overview/

 

Lived Experience/consumer speakers were involved in five of the sessions, and we also ran a workshop on “So you want to engage people with lived experience of obesity?” which was attended by about 50 people. We all received positive feedback about our contributions to the discussions, and I hope we’ve paved the way for Lived Experience speakers to be involved in more of the sessions in future.

We also had a table in the exhibition hall and had people signing up to the WIN mailing list, as well as taking away a practical guide to creating weight inclusive spaces in clinical settings. (I have some of these in hard copy, so let me know if you’d like one to take along to any healthcare setting you attend regularly!)

Takeaways and personal reflections

  • If carrying extra weight is either causing you health concerns, or you’re concerned about your increased risk of future health concerns, treatments are available. These include a few different types of medications as well as surgery – and options are increasing. These clinical interventions may complement individual behaviour which could include changes to nutrition, physical activity, sleep, stress and social connections.
  • Extra weight can be a risk factor for some people for some health issues. To work out if carrying extra weight has health implications for you it’s important to speak with an informed health professional who has contemporary and detailed knowledge on obesity, overweight and health – and can help you assess your personal risk, in the context of your life, so you can work out the best treatment and care options together.
  • Currently, it’s really hard to find informed health professionals who have contemporary and detailed knowledge on obesity, overweight and health. Health Consumers’ Council is working with the WA Primary Health Alliance and the WA Department of Health to provide consumers with access to a list of health professionals who have undergone additional training on this topic as a starting point – watch this space!
  • Adolescence may be a critical time to offer person- and family-centred interventions – changes made at this point can be life-changing and long-lasting.
  • There is a critical shortage of treatment services for obesity – particularly for adolescents. (I personally find this borderline unethical.)
  • I think there needs to be a lot more discussion and review about bariatric surgery. I learned that currently, it’s believed to be difficult to work out which patients will get positive outcomes from the treatment – with outcomes varying significantly. I was also reminded that one of the possible benefits of this surgery is extended life expectancy – and that this effect may still be likely, even if someone regains weight after the surgery. (Overall, I think we need to upskill a few more consumers to learn about the technical details of this treatment and cast an informed consumer lens over the evidence and be part of the debate. I certainly don’t feel informed enough to go up against clinical experts on this subject.)
  • From a value-based healthcare point of view, I believe there could be some consideration given to funding models for bariatric surgery – for example, I wonder whether surgeons would be more invested in helping people to work out if surgery was going to be right for them, if the surgeon’s payment was impacted by the outcomes of the surgery (as assessed against patient-reported outcome measures agreed upfront). In fact, this could be applied to lots of types of treatment…
  • Weight stigma has a huge role to play in muddying the waters on healthcare in this area. I’m left wondering, how can we get to a place where everyone can distinguish between decisions we’re making based on desires we might have to look a certain way (influenced by societal pressures) versus decisions we’re making that could improve our health – and so make a really informed decision about what actions to take?
  • I think we also need more deliberative discussions as a community about how we navigate the various aims of a) dismantling the obesogenic environment[2] we live in, b) creating the conditions where people are able to more easily do things that have a positive impact on health (and broaden this beyond nutrition and physical activity), and c) ensuring personalised care and treatment is available to people whose health is impacted by carrying extra weight. Unfortunately, the public health narrative still too often contributes to weight stigma.

Clare Mullen, October 2022

p.s. as well as the serious work, it was great to meet and connect in person with the people involved in this work that I’ve been meeting online for the last couple of years.

[1] Basic research, also called pure research or fundamental research, is a type of scientific research with the aim of improving scientific theories for better understanding and prediction of natural or other phenomena, https://en.wikipedia.org/wiki/Basic_research#cite_ref-Research2014avg_1-0

[2] “The term ‘obesogenic environment’ is used to describe an environment that promotes obesity”, https://www.aihw.gov.au/reports/overweight-obesity/overweight-and-obesity-an-interactive-insight/contents/causes

The time is now!

Last week I was lucky to be able to travel to Melbourne and participate as a consumer/Lived Experience representative in a couple of conferences.

The prompt for my trip was to attend the International Congress on Obesity (ICO) – I was part of a group of Lived Experience advocates, including some of the team from the national Weight Issues Network. This is a large conference – around 1,000 people from all over the world – that takes place every two years. This was the first year that people with lived experience were explicitly included.

As I was going to be in Melbourne anyway, I also went along to the Wild Health Digital Health summit. I was alerted to that by regular posts from someone I’m connected with on LinkedIn.

It was a massive week of learning, reflection, observation, and ideas sparking. It’ll take a while for me to make sense of everything – but here are some initial cross-cutting reflections from the two events. Some of these are reiterations of things I’ve known, others are new.

I think it’s time for a revolution in how we think about consumer, carer and lived experience input.

  • Having a consumer/lived experience perspective in the room changes the nature of the discussion
  • Speaking up when I’m the only, or one of very few, people with a consumer/lived experience perspective requires extra energy from me – I need to prepare for that and factor in recharge time
  • We need to move away from the idea that it’s ok to only have a handful of people with consumer/carer/lived experience perspectives in a room when there are hundreds of other people with professional/learned experience perspectives
  • There must be consumer perspectives at every table where decisions that impact us are being made – this includes at the highest levels of government: for example, when health service funding models are being conceived and developed
  • This mean organisations need to step up their level of investment in building capacity of people with consumer/carer/lived experience perspectives to also become “learned experience” experts – particularly in technical areas – while retaining a consumer/carer/lived experience lens.

Speaking truth to power

In many of the discussions I was in last week, I very much felt a responsibility to speak consumer and lived experience perspectives into the room.

There is currently no democratic forum in Australia where consumers, carers, and community members can hold our elected representatives to account for the state of our health and social care system.

We are required to talk to our State representatives on State-funded issues and our Federal representatives on Commonwealth-funded issues. I believe this is a massive contributor to the ongoing tolerance of a highly fragmented health and social care system. It is essential that consumer and lived experience perspectives are spoken into every discussion that impacts our health and social wellbeing – so that people can move away from “meh, what are you going to do?” to “right, what are we going to do?!”.

Time to “professionalise” the consumer/lived experience voice?

I am hugely privileged in that I have a paid job in consumer/lived experience systemic advocacy and engagement. This means I have time to connect with a wide range of people with diverse consumer, carer and lived experience perspectives, and I also have time to read (some of!) the tsunami of government and academic papers that are churned out relentlessly about how to improve our health and wellbeing, as well as the systems that support them. Reading these with a consumer lens can result in quite a different interpretation than some other lenses.

But at a very rough calculation, I’m probably one of approximately 200 people[1] across Australia who have that privilege. Compare this with 642,000 health practitioners working in their registered professions[2] in 2020 and a further 588,000 people[3] working in welfare roles. And that doesn’t take into account people working in health and social care policy/government roles.

So even if everyone of those 200 people in paid systemic advocacy roles are superstars (which I’m sure many of them are), there is no way they can be in every high level policy/agenda setting discussion where a consumer/lived experience perspective is required!

As an example: one of the speakers at the Wild Digital Health Summit commented how positive it was that there were now 32 Chief Nursing and Midwifery Information Officers across Australia. It occurred to me,

…what might it be like if we had 32 Chief Consumer Information Officers across Australia?

Building consumer leadership capacity and technical knowledge – while staying grounded in lived experience

When I was at the Wild Health Summit, I was very aware of my lack of technical knowledge of the subject. (At one point, the fabulous Heather Grain was introduced on a panel as being an expert in “fire” – which I thought was interesting, but not that relevant. I have subsequently learned that they said FHIR which stands for Fast Healthcare Interoperability Resources!)

So I’m left thinking – how do we ensure that there are enough people with both a strongly grounded consumer/lived experience focus and the technical knowledge to be able to add real value in some of these more technical discussions?

I wouldn’t start from here…

Another area that I think urgently needs more people with a grounded consumer/lived experience lens and technical expertise is that of health and social care system funding models.

At both the Wild Health Summit and the ICO event, the consequences of our current funding models for health and social care came up. Both the fee for service/Medicare funded primary care system, and the activity-based funding model in hospital services, incentivise clinicians and healthcare organisations to “do more things”.

How can we have a system that is focused on prevention of ill-health, and promotion of health and well-being, when we’re incentivising the system to deliver more healthcare?

The time is now

At a recent consumer/lived experience representative network event in WA, we discussed the need for a consumer/lived experience/community-led summit on health and social care.

If we as a community don’t take the lead on outlining our requirements for a system that truly focuses on the health and wellbeing of the people in the community, we will see the consequences of a health and social care system that is designed to meet the many and varied vested interests of people and organisations who are tasked with delivering that care, rather than the people who experience it.

Now that I’m back to my day job, I’m going to be thinking about how I can play my part in building this social movement for change.

Clare Mullen, October 2022

[1] Based on 6 states and 1 territory with a peak health consumer body, plus 3 other organisations, with an average workforce of 5 people focused on systemic advocacy; plus a Council of Social Services in each state and territory; plus national consumer/lived experience bodies

[2] https://www.aihw.gov.au/reports/workforce/health-workforce

[3] https://www.aihw.gov.au/reports/australias-welfare/welfare-workforce

[4] https://www.ipaa.org.au/latest-abs-public-sector-employment-figures-now-available/

 

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.”

 

***

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)