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Consumers on song in health research, policy and care: Shifting Gears day one

The Consumers Health Forum’s Shifting Gears Summit got off to a fast-paced and impressive start yesterday, as you can see from Jennifer Doggett’s musical mix-tape inspired wrap below.

The Croakey News team was also following #CloseTheGap day and the associated report yesterday, with both events trending nationally on Twitter. It was a timely confluence, with the integral role of consumer leadership central to both initiatives.

You keep following the Shifting Gears presentations via #ShiftingGearsSummit on Twitter and via this Twitter list of participants.

And we’ll have a brand new wrap of events up at Croakey for you tomorrow!


Jennifer Doggett writes:

Day one of the Consumers Health Forum’s Shifting Gears Summit delivered a packed program of speakers and presenters, supported by a vigorous online chat that ran beside the presentations, and a buzz of Twitter commentary that saw it trending nationally at some points in the day.

A collaborative “mixtape” (Spotify playlist), started by health consumer leader, Belinda MacLeod Smith, provided a soundtrack for the event and elegantly captured many of its main themes.

Participants can access the playlist (and add their own contributions) here

Inspired by the playlist, we bring you a hit parade of highlights below.

We Belong

A consistent message of Day 1 was that consumers belong in all areas of the health system.

Consumer advocate, Kellie O’Callaghan, outlined the many ways in which health services could engage consumers in “planning, design, measurement and evaluation, co-design and co-production,” highlighting the importance of “robust and authentic” consumer engagement to a high performing health system.

Without consumers there is a key deficit in our health system with no-one to challenge group think.”

O’Callaghan described the “deeply rich and insight-filled relationships” that result from consumers sharing their lived experiences and highlighting gaps in our current system. “Consumers should see themselves reflected in services and health systems.”

CHF CEO Leanne Wells highlighted the Collaborative Pairs Australia project, CHF’s adaptation of the UK’s Kings Fund program, which teaches health administrators and clinicians to embed collaborative practice with consumers into their work.

Mohammad Al-Khafaji, CEO Federation of Ethnic Community Councils of Australia, went further, suggesting that consumers be embedded in health departments to ensure their experiences informed government policies and programs.

Participant Bruce Robertson reminded delegates that all consumers should be included in engagement strategies

Great to have a scaffolding system for consumers to navigate, but they also need to have a safety-net in place so they do not fall through the gaps that are still and will always be in our healthcare systems.”

PhD candidate Louisa Walsh described her research looking at the use of social media as a tool for consumer engagement. She said that some groups that are unrepresented may be more likely to use a social media-method of feedback/engagement (including young people, Aboriginal and Torres Strait Islander people, disabled and chronically ill people).

But consumer rapporteur Renza Scibilia, whose Twitter commentary often challenged delegates to look further, argued that simply belonging was not enough:

It’s Tricky

Consumer engagement “might not be easy, but it’ll be worthwhile,” according to Belinda MacLeod Smith, consumer project leader for Safer Care Victoria. A number of presenters on Day One agreed with this sentiment, describing both the challenges and benefits of “shifting gears” to a more consumer-centred health system.

Consumer advocate Craig Cooper observed that the biggest improvements can be made through having the difficult conversations between consumers, clinicians and the health system – as long as these come from a place of respect and trust.

The importance of “becoming comfortable with being uncomfortable” was described by Kellie O’Callaghan who argued that this was necessary to challenge current health system policies and practices.

O’Callaghan also encouraged participants to challenge the idea that it was too complex to embed consumers in all areas of the health system. This view was echoed by the presenters who described positive examples of how services now look to consumers to help them improve their performance.

Susan Pearce, Deputy Secretary Patient experience and system performance for NSW health, described how NSW had been publicly reporting patient experience measures for a number of years, including from EDs, maternity, outpatient services and for Aboriginal and Torres Strait Islanders consumers.

She admitted that there were some hard learnings in this data that made people in her organisation feel uncomfortable, including the that disparity exists between Aboriginal and non-Aboriginal people’s experiences, which she described as “deeply troubling”.

Pearce said that while this is difficult, it means they can work through the findings and use the insights from consumers to improve the care they provide through their services.

Delegates to the Summit chimed in with insightful comments on the challenges of consumer engagement at both the individual and systems levels.

Sharon Williams stressed that a feedback system will only be effective if consumers feel comfortable raising concerns, and Sue McFarlane suggested that patient story at the opening of every meeting could keep consumers at forefront of everyone’s minds.

Karen Gainey reminded participants that while many challenges remain for consumers in the health sector, we do not need to remake the health system from scratch but can build on the great examples worldwide of consumer engagement and integration.

Time after Time

There was a tension in many presentations between acknowledging progress over time and recognising how far there is to go before our health system is genuinely consumer centred.

Rapporteur Roxxanne MacDonald said that as a young consumer it was important for her to recognise how far we have come.

Anne McKenzie, described the evolution over time in her organisation, the WA Telethon Kids Institute, observing that consumers were now “embedded in everything that happens with consumer engagement a key element for success.”

Key factors driving this change were “senior champions, money and including consumer engagement in the strategic plan so that it is a goal that everyone is expected to address.”

Rapporteur, Lara Pullin, referred to a low base for Aboriginal and Torres Strait Islander people, recalling how in her lifetime Aboriginal people were turned away from hospital and had to give birth under a tree. Pullin said it was important to recognise that progress had been made but that there was still a long way to go.

The journey of consumer engagement from tokenism to genuine influence in New Zealand was outlined by Rosalie Glynn, Chair, Consumer Council at Counties Manukau Health.

She described how in the early days consumers were only consulted once decisions had already been made but that,  with the development of Consumer Councils, these days there are 250 consumers  sitting down at least monthly in health boards around NZ, shaping decisions being made about health.

Said Glynn,

Consumer based health care is a journey, we have to be in it for the long term.”

Power to the People

The shifting power structures of the health system, from provider-centred to citizen-centred, were described by Vincent Dumez, a Canadian patient advocate and Co-director of the Centre of Excellence on Partnership with Patients and the Public in Montreal.

Dumez described a “revolution” in health care driven by consumers with lived experience. He contrasted the “patient of today” with the “patient of tomorrow”, stating that in the future patients “will be recognized as full actors of care and will own their medical information.”

Dr Lynne Maher, Innovation and Improvement Clinical Director, Ko Awatea, described how partnerships at every level of the system are good not just for patients and families but for staff as well,

That is the whole notion of partnership – every single party has expertise.”

Other participants pointed out the potential for some consumers to miss out on the benefits of shifting power structures.

Jane Drumm asked “Could it be that the “revolution” (empowerment of the patient and family to be involved in their own care) possibly drives inequitable health outcomes for Indigenous and ethnic communities, who may not be as empowered?”

Louisa Walsh challenged the rhetoric of “consumer empowerment” arguing that “while it’s true that in consumer engagement, services and their providers largely hold the power, often what consumers need more than ’empowerment’ is a removal of disempowering health structures. “If you lower the wall first it’s much easier to help people over it.”

Money, Money, Money

The importance of funding systems and resource allocation was raised by several presenters, including Jo Watson, consumer advocate and Deputy Chair of CHF.

Watson recognised the leadership by Australian Healthcare and Hospitals Association in promoting a national value-based approach to health funding as a patient-centric way of addressing systems issues such as out-of-pocket costs.

Leanne Wells and Janette Donovan both highlighted the value and need for support of the Real People, Real Data project. Donovan described this as a “fabulous tool for collecting qualitative data” and Wells called for funding to modernise, update and better customise the initiative.

Kelly Foran’s presentation focussed on the need for resources to support consumers with serious health problems. This issue was made clear to her when she was forced to leave her small baby behind for a six week hospital stay to treat her brain tumour.

Her powerful presentation described how her family struggled with finances during her hospital treatment. “We had to leave work and had no money – our lives stopped,” she said.

The financial impact of lengthy hospital stays, first for her and then her baby, prompted her to set up the Friendly Faces Helping Hands Foundation. The Foundation has now helped over 90 000 people wanting answers to practical questions such as where to park the car, how to access cheap accommodation and meals and where to find a 24 hour supermarket.

Funding issues were also highlighted in the “Big Ideas” session where Azure Rigney argued for bundled funding reform for maternity services. Under this model women would purchase services of their choice, which she argued would improve birth outcomes and also save money (she estimates between $800 and $1000 per birth).

Women are easy prey and it’s about the money. This model would drive innovation and give women more autonomy.”

Participant Tammy Wolffs made the point that to be genuinely consumer-centred this model should allow women to choose a “medicalised” birthing option as well “It would need to give consumers what they want both ways though – a woman should also be able to choose high intervention, without judgement.”

The importance of digital resources was raised in a number of sessions by both presenters and participants.

Participant Penelope McMillan pointed out the “desperate” need for a plan to deliver the internet to everyone, pointing out that many people who are homebound are living in poverty and that people in poverty are more likely to have no digital access.

Margaret Burdeu agreed, adding that “digital access is another plank in the social determinants of health – it is a humanitarian imperative and crucial to equitable access into the future.”

Consumer rapporteur, Lara Pullin, reflected on the importance of resources to her experience as an Indigenous person who was the first in her family to go to university. She described economic issues as “crucial”, including the provision of financial support outside of the health system.

Little Lies

 The need for honesty and transparency in consumer engagement was a consistent theme throughout the day.

GP Dr Nicole Allard highlighted the importance of “embedded and authentic communication” in the model of “health concierges” developed by Co-health to provide information to residents of the public housing towers locked down during the Melbourne’s COVID-19 outbreak.

Allard said the model was well accepted as it involved the community and recognised their expertise and the limitations of providers’ knowledge.

People in the towers had their own expertise – some of them were nurses. Many were getting information from family overseas. We had to acknowledge that, and also acknowledge what we didn’t know.”

Emily Phillips from NACCHO stressed that the best information for Aboriginal and Torres Strait Islander Australians comes from their own communities.

She attributed the success of the COVID-19 response in Aboriginal and Torres Strait Islander communities to the leadership by communities, and close involvement of community leaders and Aboriginal and Torres Strait Islander experts.

Renza Scibilia expressed some frustration with her experience of consumer engagement as “window dressing”, saying that she had often found that consumers may be asked for their views but “the ability to influence isn’t there.”

Everybody wants to rule the world

Shifting power relations were a theme raised by many in formal presentations and in commentary on Twitter and the online chat.

Louisa Walsh analysed the concept of empowerment in a Twitter thread, where she argued that this term “still positions the power to control who speaks/contributes with the people/groups who hold more power – in this case, hospitals/service providers.”

While it’s true that in consumer engagement, services and their providers largely hold the power, often what consumers need more than ’empowerment’ is a removal of disempowering health structures. If you lower the wall first it’s much easier to help people over it.”

The power of GPs in the health system was raised by some participants, including Kristyn Begnell who described GPs are the gatekeepers who could refuse to give referrals for women to see a privately practicing midwife.

Tara Lee added that the GP referral process is “a systemic barrier to seeing the right person for treatment.”

Participant Bruce Robertson pointed out that political power was also part of this discussion, arguing that we need Federal leadership on issues like prevention, in particular obesity and a sugar tax.

Azure Rigney identified the power of vested interests to resist consumer influence. Said Rigney,

There is great resistance to change in the health system through medical lobbying. We need governments to listen to consumers over medical lobbying,”

You Gotta Be….

…..kind, according to the Director General of Health NZ, Dr Ashley Bloomfield.

He described the importance of the ‘Be kind’ message, central to the NZ Government’s communications and part of the messaging behind NZ’s lockdown which had the effect of making people consider others: their neighbour, parents, people who are isolated.

People will make sacrifices for the common good if they understand the government is acting for the good (health and wellbeing) of citizens,” he said.

His presentation outlined the key values informing the NZ Health response to COVID: kindness, compassion, humility in leadership and curiosity. He argued that from these values will flow appropriate and adaptable responses to crises.

Other participants at the Summit contributed their perspectives on what values and behaviours are important for meaningful consumer engagement.

Roxxanne MacDonald highlighted the importance of “respect, trust, kindness and empathy”.

Louisa Walsh stressed the need for “strength of conviction and ability to convey your strength of leadership to treating professionals.”

And Renza Scibilia picked up on the theme of being kind to yourself, as well as others:

You’ve got to understand your limits and take care of yourself.”

You’re the Voice

From the opening session, including an Acknowledgement of Country with a gentle rendition of Yothu Yindi’s Djäpana by the Kari Singers, consumer voices prevailed on Day One of the Summit.

Youth advocate and consumer rapporteur, Roxxanne MacDonald, described the “energy and sense of optimism from the consumer voices throughout the event.”

In a presentation about using consumer voices to improve service delivery, Rosemary Joiner described West Gippsland Healthcare Group’s Consumer Stories program.

Joiner outlined how the program looked at feedback and complaints through a continuous improvement lens. She said the stories collected provoked thought and conversation, guided professional development and education, and empowered both patients and staff.

One example she provided was of a consumer who shared a story about the discrimination they faced at an ED due to their LGBTI status. This led to the development of a new LGBTI inclusion program – the story was a true catalyst for change.

Michael Greco described how his organisation, Care Opinion, enables consumer storytellers to engage with health services in a safe, public, transparent, and meaningful way.

He argued that this model ensures that the process of feedback and engagement is citizen-centric as consumers can see who is reading their feedback, how it is being responded to, and whether it makes a difference.

The need for more robust ways to listen to diverse consumer voices was emphasised in many presentations.

In the “Big Ideas” session Penelope McMillan and Alejandro Pinero de Plaza provided their vision for using digital platforms to improve social and medical inclusion for people who are homebound by illness. They described this as a “massive problem” due to the invisibility of homebound people.

Peer support featured in two of the “Big Ideas” presented at the Summit.

LinkMate was developed by David Titell after talking to his father about the mental health challenges they both faced. Titell described how he found it easier to relate to peers rather than psychologists who hadn’t experienced what he was going through and so developed LinkMate to partner members with ‘mates’ with lived experience of mental health struggles.

Saran Chamberlain and Caleb Rixon, both young stroke survivors, created the Genyus network, to fill the need for peer-led engagement for young people experiencing stroke.

Other participants pointed out that there were important consumer voices missing or largely absent from the Summit.

Stephen Alomes noted that there were few men among the participants and Leslie Gilham stressed the need to engage with more Aboriginal and Torres Strait Islander consumers and bring their voice to the table, particularly given that it was #Closethegap day.

Consumer Rapporteur, Lara Pullin, called on non-Indigenous consumers to act as allies to Aboriginal and Torres Strait Islander people “There’s not enough of us so we need you as allies,” she said.

Another of the “Big Ideas,” a model for nurse-led, multidisciplinary community health centres freely accessible to all Australians put forward by Sarah Barter, was a reminder to participants of how much can be learned from the Aboriginal Community Controlled sector about true consumer leadership.

In a thread on Twitter, Croakey Editor In Chief, Dr Melissa Sweet, who attended the launch of the Close the Gap Report yesterday, “how much wider Australia can learn from Aboriginal & Torres Strait Islander peoples’ achievements & knowledge, as evidenced by their world-leading response to COVID-19”. She wrote,

One of [the report’s] very strong messages is the importance of strengths-based approaches, and respecting and engaging with communities’ leadership and knowledge — its call for governments to recognise that communities have their own solutions has wider resonance”

The summit continues today, Friday March 19, and the Croakey team look forward to bringing you more of the highlights.

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