It’s time for community power

To realise the vision of a thriving and healthy society, we need to reimagine the relationship between the people who experience health and social care, and the people who work in health and social care services. It means moving beyond the paradigm of “consultation” and “engagement” to true community partnership and leadership. Building capacity in community leadership needs to be matched by building capacity in a new model of public sector leadership to develop leaders who are comfortable ceding and sharing power.

By Clare Mullen, June 2023

Where are we now? The reality of health inequality in Australia

Many people are very well served by Australia’s health system. For example, Australia has one of the highest life expectancies in the world. But this can mask the reality for many people in Australia who experience the impact of multiple levels of exclusion and inequity in health outcomes including Aboriginal and Torres Strait Islander people, people with disability, people living regionally, people experiencing poverty and people from the LGBTIQ+ community.

At the same time, health services in Australia are in crisis, as are many Western health services around the world. That’s because they were designed to solve a very different set of health and social care issues than the ones we face today.

 According to the World Health Organisation, “numerous studies suggest that SDH account for between 30-55% of health outcomes”. Socio-economic changes over the last few decades mean that the percentage of people participating in the workforce has increased and the average frequency of social contact has fallen in all groups in Australia.

 If “hospitals can’t heal health inequalities”, who can?

© World Obesity Federation

Partnering with Consumers

The Australian Commission on Safety and Quality in Healthcare has embedded the need for “Partnering with Consumers” into its national safety and quality health service standards because of the evidence relating to the benefits of consumers being involved in decisions relating to their own care, and in organisational design and governance.

It’s now time to be brave and step into a new world and embed approaches that draw on the expertise and strengths that both partners bring to delivering positive health and social outcomes for the community.

For new relationships to exist in how health and social care outcomes are delivered, we need to see new relationships in how health and social care systems are governed.

Transforming health and social care outcomes through community power

This reimagining of the relationship between people who experience health and social care, and people who work in health and social care, is already happening around the world. And it’s delivering significant benefits for the community. In Australia, “Compassionate Communities” are a great example of how this new relationship can deliver great outcomes. Research has shown that Compassionate Communities, which involve trained community members volunteering to connect with other community members who may be dealing with a life limiting condition, or facing the end of their life, can lead to a reduction in hospitalisations – a positive for the person, their family, and the health system. A major benefit of this approach is in the area of social support.

In the UK, “social prescribing” has been shown to reduce emergency hospital admissions with recommendations for a stronger role for community members in achieving better health outcomes. This is now being trialled in parts of Australia.

This is going to hurt

And yet, these models are notable because they are rare. To ensure and accelerate the spread of these models, we need to acknowledge and deal with the dual elephants in the room: power and leadership.

 I have worked in the Australian health sector since 2007. In that time, there has been significant progress in “consumer engagement”. Today it is widely and publicly stated that “working with consumers” is a critical success factor in a modern health system. And yet…

We need to talk about community power

Research into compassionate communities highlighted the difficulties inherent in challenging the status quo: “Gatekeeping is a well-recognised strategy used by those with power and control to maintain the status quo. Consequently, questioning legitimacy was felt more strongly by participants.”

The same report highlights the need for a different leadership paradigm if the benefits to health and wellbeing from community-led models like this are to to be fully realised: “Representations of leadership currently available, which focus on the heroic individual or the individual who holds power and influence, are not helpful for people doing this work. Instead collective, or dispersed, leadership exemplars need to be developed, shared and modelled by current leaders and organisations in this field”.

While I love Buckminister Fuller’s notion that “…To change something, build a new model that makes the existing model obsolete”, while the “existing model” is sustained with public funds, we need to focus our attention on ways to enable those public funds to deliver the best possible public good.

I have seen the difference it can make to have a “consumer” in the room. I believe that true public sector benefits can only be fully realised by having more grassroots community perspectives represented in every space where decisions are being made that will impact on the community.

How could it look?

Real transformation is a long game. But there are examples of this new relationship already operating in Australia that could be learned from and built on by others:

  •  Governance: The WA Mental Health Commission has people with lived experience of mental health conditions, and being a carer for someone with mental health conditions, involved at the highest levels of governance - how different could decisions be about all aspects of health if there were consumer/community perspectives represented at the highest level of all health system governance?

  • Health service delivery: the first Aboriginal community-controlled health service was set up in the 1971 and there are now 145 across the country. In 2022, the national Consumers Health Forum and the National Rural Health Alliance published a report calling for Rural Area Community Controlled Health Organisations model of primary health care services.

  • Public health initatives Vic Health’s Future Healthy program invests in grassroots community organisations to make positive change happen

We can make this happen

Right now, there are groups of consumers, carers and community members who are experienced and skilled representatives ready to be involved as partners in the governance of health and social care systems. The beauty of people with these perspectives is their ability to see beyond the silos that seem to be an inherent feature of government workings.

I am convinced that having more grassroots perspectives being spoken into rooms where major decisions are being made has the power to lead to the transformation in health and wellbeing that our community deserves.

References

o   Across Australia: https://www.thegroundswellproject.com/compassionate-communities

o   Research report: https://www.thegroundswellproject.com/compassionate-communities-report

o   South West WA: https://comcomnetworksw.com/

Health consumer organisations in Australia

In Australia, there is a proud history of people who experience healthcare stepping up to advocate for their rights, and the rights of others, in the face of less than ideal healthcare and health experiences. Contemporary health consumer bodies emerged from work done by consumer and community advocates in the area of women’s health, mental health, Aboriginal health and self-determination, and AIDS, that successfully challenged the paradigm of top-down power and control. ·       Consumers Health Forum (national)

There is currently no state health consumer organisation in South Australia or the NT.

There are also peak organisations for carers and mental health consumers in most states and territories.

About the author

Clare is the Executive Director of Health Consumers’ Council WA (HCC).

Clare Mullen joined HCC in September 2018. Her background is in change management and communications in the health and social care sector in the UK and Australia. In Australia she has worked in a range of roles in the WA Department of Health and the WA Primary Health Alliance. In the UK, she worked on a national frontline leadership program in the National Health Service which brought frontline staff and consumers together to work on improving health services in their local area.

Clare leads HCC’s involvement in the WA Sustainable Health Review – a wide-ranging program of reform across the WA health sector. She also helped establish the WELL Collaborative – a forum which brings together consumers and people with lived experience, with clinicians, academics and policy makers to change and improve how we talk about and manage healthcare for people with overweight and obesity.

She is passionate about creating opportunities for people who use the health system and people who work in the health system to work together to improve health outcomes.

Outside of HCC, she Chairs the national Weight Issues Network, a consumer-led advocacy group for people impacted by weight issues, is an Advisor to the national Obesity Collective, is a member of the Reimagining Government Network, and is on the Board of the LJM Memorial Hospice. In her spare time, she loves listening to podcasts, watching British crime dramas, and doodling with thread.

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[14] Future Healthy, Vic Health. https://futurehealthy.vichealth.vic.gov.au/projects last accessed 04/06/23

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[18] “Movement, Knowledge, Emotion: Gay activism and HIV/AIDS in Australia, 2011, p93, https://www.jstor.org/stable/j.ctt24hd2p.7?seq=13 last accessed 03/06/23

Power to Persuade