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Navigating the road to consumer leadership in health: Shifting Gears day two

If one measure of a good conference is the questions it raises, the conversations it engenders and the relationships it fosters, the Consumers Health Forum of Australia Shifting Gears Summit, which finished yesterday, was a raging success.

That this was achieved via a virtual event makes it all the more remarkable, but consumer leaders and advocates are passionate. They owned the Summit with their presentations, panel participation and reporting; their tweets and conference chat commentary.

In the day two instalment of her coverage, below, Jennifer Doggett captures some of these key presentations and ensuing discussions.

Do track down the #ShiftingGearsSummit hashtag on Twitter check out this Twitter list of participants if you’d like to explore further.


Jennifer Doggett writes:

Day two of the Consumers Health Forum’s Shifting Gears Summit was all about the shifts happening all over the health system – in quality and safety, research, policies and programs and consumer engagement.

Presenters outlined both the successes and challenges they have experienced while trying to shift cultures and practices. Participants asked insightful questions, questioned assumptions and contributed their experiences via the chat and Twitter thread.

Some highlights from these presentations and discussions are outlined below.

Shifting quality and safety

Facilitator, Dr Lynne Maher, Director for Innovation at Ko Awatea, set the scene for a panel discussion on quality and safety. She outlined multiple levers for improvement, including medicines and device regulation, workforce credentialing and accreditation, and mandatory health service standards.

She also highlighted the need for a culture of innovation and continuous improvement.

Professor Jeffrey Braithwaite, from the Australian Institute of Health Innovation, reminded participants that we have seen improvements in healthcare quality and safety over the past 30 years. However, he also noted that 40 percent of care provided currently is either unnecessary or harmful, and this has proved hard to change.

He stressed the need for a collaborative approach to improving quality and safety:

No one of us is as smart as all of us. Healthcare is a team game – we’re smarter when we pool our brains.”

His suggestion that consumers should visit their doctors to discuss their health instead of their illness drew some contrasting responses from participants.

Sherrilyn Ballard welcomed the focus on wellness saying that this model has a lot to offer within a culturally safe and diversity lens.

However, Louisa Walsh said she had “a bit of a visceral reaction” to Braithwaite’s statement, arguing that instead of medicalising ‘wellness’, we should create environments which make wellness the default, and support communities and individuals to manage their own wellness.

Clare Mullen was also not convinced that doctors should be central to a wellness model. She commented that the role of community, neighbourhoods and peers should be emphasised rather than health professionals.

Braithwaite highlighted the emerging field of genomics as one in which consumer engagement is critical, particularly in relation to the use of personal data.

Maryanne Richardson agreed that a key question needing to be answered in this area is “Who owns the health information and what will it be used for”.

More information on the role of consumers in genomics was provided via the poster presentation from Janney Wale from the Melbourne Genomics Community Advisory Group (CAG).

The poster outlined how the CAG works to address the complex issues around communication, privacy, informed consent, ethics, patient experience, standards/policies, data storage and re-use of data.

This includes initiating a “Register of CAG activities” to record and demonstrate the value of the partnership in enabling use of genomics within public hospital practice in Victoria and beyond.

Another panellist, Jennifer Zelmer, President and CEO at Healthcare Excellence Canada, described how COVID-19 shone a spotlight on vulnerabilities in our health systems, as well as revealing some common strengths and resilience.

We have seen an explosion of virtual care globally. Changes happened in a month that would have taken ten years previously. There have been some fabulous results but also some cases where this was rushed and needs to be improved.”

Zelmer identified that having high performing primary health care and public health sectors rendered health systems better able to respond effectively to the pandemic, while challenges such as systemic racism and poor health system integration hindered the response.

Weaving  together different forms of knowledge – traditional, individual, community and clinical – she said, would help  address these challenges.

Professor Anne Duggan, Clinical Director of the Australian Commission for Safety and Quality in Health Care, argued that the future of health care depends on wise consumers challenging health professionals’ assumptions about whether interventions are necessary.

In response, Dr Christine Walsh of the NZ Quality and Safety Commission said that we are all wise consumers and need to be supported to be so. She described consumers, families, communities and whanau as “the biggest untapped resource in the health system”.

Jacqui Pierce also welcomed the focus on consumer experience of care,

We need to put quality of life at the forefront because too often the quantity of life is the focus of treatment.”

Duggan highlighted the important role played by clinical care standards and projects such as the Australian Atlas of Healthcare Variation which reveal gaps and over-servicing in care across the country.

Her suggestion that consumers should ask care providers “Walk me through how this will alter my quality and quantity of my life” was welcomed by participants, including Jacqueline Forst who said she would love to see this on the standard consent forms.

Shifting research

Kicking of the research stream for the day, Yvonne Zurynski from the NHMRC Partnership Centre for Health System Sustainability (PCHSS), explored how consumers can influence the health system to move from volume-based care to value-based care.

She described the PCHSS’s partnership with the CHF as “very important” and outlined some key findings from a joint research project on consumer experience of health care.

This project found that navigating the health system was very problematic for consumers with chronic and complex conditions with 50% of respondents reporting that they found it hard to find the best health provider for them.

Zurynski outlined ways in which consumers can influence health systems change, including through questioning the assumptions of researchers, health care providers and health service managers.

In responding to the suggestion that consumers should be empowered to ask questions Susan Sims noted that this is just one part of the equation. The other part is getting health professionals’ to recognise that patients and carers are the experts in their own lives.

Co-presenters of this session also highlighted the importance of engaging with specific groups of consumers in research, including consumers with rare diseases (who often know more than clinicians about their condition) and young diverse consumers who are often overlooked.

Ruth Cox described how internationally, partnering with consumers in health-care research is being increasingly accepted as a philosophical necessity as well as having positive outcomes for research and those involved.

Her poster presentation outlined how the QEII hospital in Brisbane is applying best practice principles to successfully partner in a series of studies.

Another poster presentation, from Monash University’s Darshini Ayton, looked at consumer and community involvement in health care research and identified the following enablers and barriers:

Shifting gears in New Zealand

Two projects from New Zealand provided very different but equally successful examples of consumer co-design.

Ester Vallero and Jennifer Shields from the Trans Health Working Group in Canterbury described their work to reduce the inequity of access and substandard health outcomes for transgender people, and the confusion around gender-affirming health services.

They identified a number of positive outcomes of the project, including:

  • Increased availability of surgical services for trans people in public health services
  • New Community and Hospital HealthPathways,
  • District Health Boards (DHBs) showing willingness to improve their delivery of gender- affirming services
  • A network of GPs supportive of transgender people
  • A Canterbury DHB hospital champion for transgender health has been identified
  • Formal connection to the Ministry of Health team working on access to gender- affirming care
  • Comprehensive community information for HealthInfo on gender identity and gender-affirming care

Ester Vallero identified the team approach as one key factor for the project’s success:

It was important to be a team with lots of allies in the community and in the health system. In our experience meaningful consumer engagement is not a job for one person.”

A procurement panel to select a new Alcohol and Other Drugs (AOD) Peer Support Service by Taranaki District Health Board was another example provided.

The need for this new service arose from a marae-based co-design hui in December 2019 at which people with lived experience were invited to speak and health professionals/service providers were invited to listen.

After working with people with experience of addiction to develop the service model, Taranaki DHB decided to adjust their usual procurement processes to engage consumers. This involved moving away from the usual paper based process and using a kanohi ki te kanohi approach with a consumer led panel.

The project was described as a “huge learning process for the DHB” which ultimately encouraged them to be more flexible and consumer-focussed.

Dallas Hikaka, a member of the consumer-led panel

The evaluation of the program found that consumers reported feeling safe, both personally and culturally throughout the process and feeling that their expertise was valued.

Public health portfolio manager, Channa Perry reported that Taranaki DHB intends to embed this approach into future procurement processes at the organisation.

Shifting gears in Australia

Numerous Australian examples of consumer engagement and co-design were presented in the plenaries, break-out streams and poster session.

One practical example of evidence-based co-design (EBCD) was provided by Tara Dimopoulos-Bick, Russell Winwood and Helen Kulas who outlined their involvement in “Bursting the Bubble”, a quality improvement project to address the controlled delivery of oxygen in acute care for people living with chronic obstructive Pulmonary Disease.

The key steps involved in this project were:

Tara Dimopoulos-Bick described how the project used photo generation to create a digital story to help everyone understand each other’s experience, a key component of the co-design process.

We asked people to take at least two photographs that represented their experiences. The photographs were collated and used illustratively alongside the experience map to share experiences at a collaborative exchange event, to foster empathy and generate a sense of needing to mobilise together to achieve change.”

Helen Kulas described how both the consumers and the clinicians loved the photo exercise, stating that it enabled them to speak to each other very powerfully during the collaborative exchange events. She said the experience of mapping and digital story generation helped move participants from “I” to “we”.

Kulas also warned there can be risks of “getting on the co-design bandwagon” if organisations do not have a commitment to working through all stages and supporting all participants throughout the process.

Co-design can be incredibly rewarding but it is also incredibly exhausting – empathy can be emotionally exhausting. We need to look after each other to get to the end goal.”

The presentation ended with a sneak peak at a board game developed by the project to help teach co-design processes.

Louisa Walsh presented her research on the use of social media as a tool for consumer engagement (previewed here at Croakey). She outlined the risks and benefits of social media for consumer engagement, including the following.

  • Risks: consumers causing harm, organisations losing control, engagement might not be as rich.
  • Barriers: consumer and provider fears, lack of consumer skills and resources, lack of organisational processes and support, social media landscape.

She also described a guide she was developing based on this research for services to share their learnings about social media engagement in order to make it more accessible to others.

Peter King from the Southern Adelaide Local Health Network (SALHN) described the “genuine partnership” SALHN has developed between consumers, community and health professionals to achieve excellence in person and family centred care.

He celebrated the success SALHN has in its COVID-19 response by focussing on teamwork, togetherness and trust and using diverse strategies to expand its consumer engagement and partner with vulnerable communities.

Said King,

We’re better than we used to be but not as good as we will be.”

Clare Mullen described how consumer stories, voices, needs, and interests were included in the development and implementation of the WA Healthy Weight Action Plan, a collaboration between Health Consumers’ Council WA, the Department of Health, and the WA Primary Health Alliance.

One key component of this project was asking GPs about the barriers they experienced in providing better care to larger patients. This revealed how much mental health can be a barrier for people with larger bodies becoming healthier and resulted in a focus on mental health in the plan.

Consumer engagement was a theme in many of the poster presentations, including one by Deborah Howe and Linda Soars which outlined the development of web resource to support the elimination of the use of seclusion and restraint in NSW acute mental health units and emergency departments.

Another example of co-design was provided in the poster presentation by Melissa Mao on the “Social Brain Toolkit”, a suite of evidence-based online interventions, co-designed with people with acquired brain injury and their communication partners, which targets communication skills post-injury.

The poster describes how the tool-kit was developed using the “Non-adoption, Abandonment, Scale-Up, Spread, and Sustainability” theoretical framework of eHealth implementation to facilitate co-design.

A poster by Karen Gainey presented the findings of a study examining academic journals’ and health organisations’ instructions for writing lay summaries. The study found that 124 of the 526 websites searched published or mentioned lay summaries and 108 of these provided sets of writing instructions.

The most common elements of these instructions referred to structure, content and length, and Gainey identified scope for increased consumer input into lay summaries to improve their accessibility to their intended audience.

Participants also contributed their views on consumer engagement through the interactive chat function.

Mahinaarangi Bartlett reminded participants that all voices are important, regardless of race, education and financial status.

Ruth Cox commented that in some ways the pandemic made consumer engagement more accessible as many meetings and conversations moved online which reduced travel and burden for many. She said that they had never had such great attendance and conversation at the QEII Consumer Advisory Council.

Melissa Cadzow related the different experiences she had with consumer engagement during the COVI-19 pandemic.

Some health services used technology to make it accessible – running with virtual meetings etc. However, others shut down consumer involvement work for nine months.”

Shifting the future of health care

The final panel session focussed on shifting the future of health care and featured an inspiring keynote from Dr Kate Mulligan, Dalla Lana School of Public Health, University of Toronto about the Ontario social prescribing program.

Mulligan provided an overview of the program developed by her organisation to improve health outcomes for marginalised and socially isolated people and to foster appropriate health systems utilisation, by creating a clinical pathway between mainstream health systems and community and voluntary supports.

Her slides told the story, showing a correlation in Toronto communities between poor COVID outcomes and social determinants such as insecure housing, food insecurity, racial segregation, poor transport infrastructure and a lack of access to digital technologies.

Her team worked via Ontario’s established community health services to address factors such as social isolation and meet basic material needs, taking a complex adaptive approach, rooted in local specificity and feedback.

Clare Mullen was impressed with the project’s outcome of an almost 50% decrease in loneliness among the community targeted. She also made the point that in Australia’s fee-for-service funding system a decrease in doctors’ visits may not be an incentive for providers.

Participants in this session engaged with Mulligan’s suggestion that the health care system needs to make “cognitive shift” from “what’s the matter with you?” to “what matters to you?”

Jane Synnot commented that it was “so great to hear people are being met where they are, that they can get help without feeling at risk”.

Candice Fuller said she loved the “walking alongside” concept!

Sian Slade from the Australian Medical Students Association said that AMSA have just started a social prescribing champions scheme – based on the UK approach – with medical students learning about social prescribing.

The final panel discussion was facilitated by Dr Lynne Maher who described COVID-19 as “in some ways a gift” in exposing the fault lines in our health system and driving rapid change.

She challenged panel members to reimagine the future of health care, eliciting a variety of responses.

Harry Illes-Mann said the most important thing is to look at the parts of our system which work well – embedding these and also looking at supplementing where they fall short. “When we work together we can get a lot done,” he said.

Tim Shaw highlighted the power of digital technology to transform health, saying that he believed that consumers have not yet benefitted from digital transformation, which so far has just swapped face to face care for online.

He described the next phase in the process as digital co-design to create new models of care to deliver what works for consumers, not just what works for the health system.

Rob Grenfell from CSIRO, stressed that equity has to be first and foremost in future transformations of healthcare. “If we don’t make equity important we will not bring everyone with us,” he said.

He made the case that we should measure health system performance by how well it serves the most difficult to reach populations.

The panel session also included a vigorous discussion on co-design. Harry Illes-Mann argued that co-design was not the only method for consumer partnerships in health care and that it could exclude some consumers.

Lynne Maher responded by highlighting co-design is contextual and can work with marginalised groups to provide a better understanding of how care would work for them.

The importance of co-design in aged care was stressed by Janette Donovan who said that this approach was very important for future of aged care and to increase older peoples participation in their care and their communities. “I am currently looking at very poor design for a new residential aged care facility that may contribute to social isolation and loneliness in one of our most vulnerable groups of people,” she added.

Reflections and key takeaway messages from the Summit were provided by the four consumer rapporteurs.

Roxxanne MacDonald highlighted the role of consumers as the drivers of transformation and the potential for digital technologies to bridge gaps.

Professor Judi Walker embraced the notion of a “wise consumer” as described by Anne Duggan, who by asking difficult questions can help combine scientific and patient expertise.

She also made a special mention of the Taranaki DHB consumer-led procurement project which she said tackled the tricky imbalance between management and consumers and transformed a bureaucratic process into something consumer-friendly which delivered real outcomes.

Renza Scibilia expressed some frustration at the lack of progress in including consumers as equal decision makers in health. She identified a “fear of equalisation – that consumers will take over” as one reason for this and suggested that behavioural research can help ensure consumer voices can be heard and make a difference.

Lara Pullin said that COVID-19 has demonstrated how issues that consumers have been working on for years are suddenly able to be addressed.

She urged participants to consider non-standard ways of engaging consumers, and to consider issues such as reimbursement for engagement as there is a divide between those who don’t need it and those who will be unable to participate without it.

Noting the absence of Indigenous voices in many sessions of the Summit, Pullin left participants with the beautiful image of her Dark Emu Dreaming – a black emu defined by the stars around it, saying “the patterns in the darkness are framed by the light.”

The Summit concluded with CHF Chair Tony Lawson thanking the 800 delegates, 50 speakers, consumer rapporteurs, NZ partners, sponsors and organisers who made the event possible.

Shifting the narrative on Twitter

A few highlight Tweets on Croakey’s selection

Analytics

According to Symplur analytics, 278 Twitter accounts had participated in the #ShiftingGearsSummit discussion by end March 19, sending 3296 tweets, and creating 26.7 million Twitter impressions.

A reminder to delegates that sessions from the Summit will be available on demand for 12 months.

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