Croakey is closed for summer holidays and will resume publishing in the week of 10 January 2022. In the meantime, we are re-publishing some of our top articles from 2021.
This article was first published on Wednesday, March 31, 2021
It was a multilayered online event, with much of each day running in six different “streams”, several panels, a robust rolling “chat”, poster presentations, breakout sessions and of course Twitter commentary.
In the post below, Jennifer Doggett spotlights 100 insights, moments and facts that will make you feel like you were there, as well as prompting reflection and further reading.
And please don’t miss the first of our two Croakey Voices podcasts, in which Cate Carrigan takes the opportunity to go a little deeper with several of the presenters and delegates.
Jennifer Doggett writes:
If you’re looking to catch up with what happened at the recent #ShiftingGearsSummit, here are some highlights, hidden gems and tips for further reading, in the Shifting Gears Summit 10 top 10s.
10 Summit locations
Bass Coast, Australia
Canterbury, New Zealand
Glenn Innes, Australia
Taranaki, New Zealand
10 Memorable Summit Quotes
It’s now or never.”
Vincent Dumez, Keynote speaker and co-director of the Centre of Excellence on Partnership with Patients and the Public at University of Montreal
The health system needs to be shaken not stirred.”
Louisa Walsh, Presenter, PhD candidate and consumer advocate
We have lived all, we hear all, we see all and we can influence all.”
Kellie O’Callaghan, speaker and consumer advocate
Kindness is a meta value – you can’t be kind to others if you’re not being kind to yourself.”
Ashley Bloomfield, speaker and New Zealand Director-General of Health
Not including consumers in health care is like throwing someone a birthday party and not inviting them.”
Anne MacKenzie, Presenter and Community Engagement Manager, Telethon Kids Institute
Care cannot be safe unless it is culturally safe.”
Jennifer Zelmer, Plenary presenter; President and CEO at Healthcare Excellence Canada
Community trust will be the oil of the future.”
Kate Mulligan, Keynote speaker and Director of Policy and Communications at the Alliance for Healthier Communities, Ontario.
Equity should be in the DNA of our health system.”
Jeffrey Braithwaite, Speaker and Director, Australian Institute of Health Innovation
We may all be from the same cookie machine but we are all different cookies.”
Mary Lynne Cochrane, Presenter and consumer advocate
Consumer engagement grows at the speed of trust.”
Peter King, Presenter and consumer representative
10 Key Summit tweets
10 Summit Tweeters to follow
Renza / Diabetogenic, @RenzaS
Roxxanne MacDonald, @roxxmacdonald
Dr Penelope, @RedFiddler
Kellie O’Callaghan, @KellieOc
Tara Dimopoulos-Bick, @DimopoulosTara
Priyanka Rai, @priyankarai113
Ruth Armstrong, @DrRuthAtLarge
Lou Walsh, @laqwalsh
Tammy Wolffs, @TammyWolffs
Brett Scholz, @brett_scholz
10 pithy comments from the online delegates’ chat
Patient voice, patient choice.”
‘The patient will see you now’ takes on a broader meeting.”
There are two ways of talking to people. One identifies their deficiencies and the other looks for their strengths, resilience and experiences. It’s important to use the latter method.”
The whole family is impacted when someone is ill; has an accident – no matter what the outcome. Being in a rural or isolated area is so challenging.”
One of our consumer reps said to use the word “input” rather than “feedback” when asking them.”
Navigation through systems is important but systems must always be reflective about their processes and systems. Consumers advocate out of necessity and that itself creates inequity – not all consumers can advocate. Systems, policies and processes need to be strong enough to respond to consumer needs without them having to advocate.”
Dismantling medical hegemony is taking time. I think we are very fortunate to have the Tiriti here in NZ ( although much work to implement the Tiriti still) which is about partnership and this lets the concept of cross sectorial rights to partnership to increase in the health space.”
Consumer leaders can be champions for health professionals – and health professionals can be champions for consumer leaders. We need buddy systems.”
Sometimes it seems that we ask for information from our community before we are ready to do something with it. We then get all this valuable feedback, and don’t have anywhere to go with it.”
Huge thanks to CHF to host Big ideas, it shows what the grassroots consumers are capable of and how the policymakers are so wary of them.”
10 pieces of wisdom from presenters
Consumers are the only people with a full view of the health system.”
We’re all in this together.”
‘Mark Doughty’ the person and ‘Mark Doughty’ the patient are very different people to the health system.”
We need clinically literate managers and managerially literate clinicians.”
Evidence is important but it doesn’t always leave much room for the patient’s voice.”
The response that consumers get from health professionals and services when they first give feedback or tell their story determines how confident consumers feel about engaging in the future.”
I often have discussions with people in position of power about the difference between power and influence. The health system in my experience is keen to allow space for consumers to influence, but not so keen to allow to share decision making power, particularly around priorities and resourcing.”
The key challenge is building capacity amongst leaders to really cede power. And that’s not easy to do in a system that likes project scopes and clear deliverables.”
We need to move beyond EBM in our teaching and include SDM – shared decision-making – with patients.”
Indigenous communities across Canada are at much higher risk and face barriers to health access, including historic and present day racism. That said, they have self-organised tremendously well to ensure protection from Covid. A key challenge is serving urban Indigenous populations equitably.”
10 important statistics mentioned at the Summit
Aboriginal and Torres Strait Islander communities in Australia have experienced no deaths from COVID-19 and have only had 150 cases.
Around 60 percent of health care is in line with evidence, around 30 percent is wasted and 10 percent comes with some adverse outcome or near miss.”
Māori are twice as likely to die of cancer than non- Māori.”
Dr Chris Walsh
Almost 50 percent of Australians surveyed reported that fundamental changes are needed to make our health system work better.”
Avoidable patient harms are one of top ten causes of deaths – the most common of these are due to medication errors, unsafe surgical care and hospital-based infections.”
Dr Chris Walsh
2.5 million Australians don’t have access to the Internet.”
Musculoskeletal conditions affect over seven million Australians (more than any other national health priority area) and are the leading cause of disability worldwide.”
50 percent of aged care workers in Melbourne were born overseas.
A social prescribing program in Toronto resulted in a 49 percent decrease in loneliness in the target population.”
89 percent of health occurs through our genetics, behaviour, environment and social circumstances.”
10 resources mentioned in presentations/chat
Collaborative practice and patient partnership in health and social services, Centre of Excellence on Partnership with Patients and the Public
The ‘Real People, Real Data’ project, Consumers Health Forum of Australia
Health Care Opinion: patient stories
Loneliness Thought Leadership Roundtable report, Consumers Health Forum of Australia
The Indigenous Genomics Health Literacy Project Queensland Genomics Advisory Group
The “Join Us” national disease-agnostic research register, The George Institute
The consumer engagement quality and safety marker (New Zealand)
Working Together: A Partnership between NPS MedicineWise and the Consumers Health Forum of Australia
Consumer and Community Engagement Framework – Western NSW PHN
Building collaborative leadership: A qualitative evaluation of the Australian Collaborative Pairs trial, Helen Dickinson Alison Brown Suzanne Robinson Jenny Parham Leanne Wells
10 highlights from the poster session
The Partnership Advisory Council
The Empowerment Ladder was developed by the Partnership Advisory Council at the Chris O’Brien Lifehouse Hospital in NSW. It demonstrates how collaborative consumer leadership and executive trusting relationships can drive better outcomes and experiences for, and with, patients.
Ruth Cox, Director of Occupational Therapy at the QEII Hospital in Brisbane, identified the following challenges in applying best practice principles to successfully partner with consumers in a series of studies.
Australian Health Research Alliance
The Australian Health Research Alliance (AHRA) poster outlined the process for co-designing an online hub to foster consumer and community involvement in health and medical research and healthcare.
Health professionals, researchers and consumers participated in the co-design process – a key part of this process consisted of a series of workshops where participants expressed their priorities for the hub.
Sydney Health Partners
Angela Todd, Research Director, Sydney Health Partners, described a small project that was undertaken in partnership with consumer networks within three large health services in NSW. The project set out to develop a resource for consumers, promoting the value of being involved in health research.
Consumers were involved at all stages of the development of this brochure, including the sharing of personal stories about their involvement in health research.
Huong Ly Tong is a digital health scientist with a background in public health. She presented the findings of a co-design project exploring consumers views on personalisation of innovative technologies such as AI, mobile apps and fitness trackers to promote healthy behaviour change.
This project found that there is no ‘one size fits all’ approach to this emerging area of health care.
Genomics research collaboration
Three case studies of collaboration between researchers and consumers in the field of clinical genomics were presented by Stephanie Best from the Murdoch Children’s Research Institute.
She outlined how to move the traditional, paternalistic conversation about patient engagement to a collaborative sharing of expertise, and highlighted the importance of approaching collaboration with realistic expectations.
The Victorian Comprehensive Cancer Centre
Dr Joanne Britto, Consumer Engagement Manager at the Victorian Comprehensive Cancer Centre, identified five levels of engagement (below) as part of her presentation on the development of a consumer and communication engagement action plan.
A collaborative project supported by the University of South Australia, Central Adelaide Local Health Network and Health Translation SA aimed to communicate advances in understanding persistent breathlessness, and evidence-based effective strategies to manage it to consumers.
Kylie Johnston from UniSA presented the eight key messages across two themes, developed in conjunction with consumers to reflect their values and priorities.
Sacred Heart Mission
Rebecca Edwards and Trevor Skerry from the Sacred Heart Mission in Victoria reflected on how their organisation had to change in response to COVID-19 in order to continue to provide care for its diverse clients, many of whom were experiencing significant hardships due to the pandemic.
A trauma-informed practice lens and a social determinants view of policy decision making were identified as key strategies to support this process.
Exclusion from primary healthcare
Dr Maria Alejandra Pinero de Plaza, an NHMRC Postdoctoral Research Fellow with the CRE in Frailty and Healthy Aging, presented her research findings on the exclusion from primary healthcare of people who are frail and homebound.
In her presentation she identified six areas for action, based on the National Disability Strategy: (1) Inclusive and accessible communities, (2) statutory protections, (3) Economic security, (4) Personal and community support, (5) Learning and skills (6) Health and wellbeing.
10 suggestions for post-Summit reading
The Patient Will See You Now: The Future of Medicine Is in Your Hands Paperback, Eric Topol MD
The Patient Revolution, David Gilbert
Health Consumers NSW and Older Women’s Network older people’s experience of ageism in the health system
The Health and Disability System Review, Ministry of Health, New Zealand
Consumer enablement: a clinician’s guide, NSW Health
Social prescribing: The next step for equitable healthcare, Kate Mulligan and Kavita Mehta
Issues Brief no 34: Can value-based health care support health equity?, The Deeble Institute
Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research, N Straiton, A McKenzie, J Bowden, A Nichol, R Murphy, T Snelling, J Zalcberg, J Clements, J Stubbs, A Economides, D Kent, J Ansell, T Symons
From Risk to Resilience: an equity approach to Covid-19, Chief Health Officer of Canada
According to Symplur analytics, 349 Twitter accounts had participated in the #ShiftingGearsSummit discussion by end March 31 2021, sending 3719 tweets, and creating 29.01 million Twitter impressions.