What would our health systems look like if consumers were in the driving seat – if consumer experiences and leadership were enabled to seamlessly transform health and social care to better serve their needs?
In Australia we do have successful models that have arisen from genuine consumer co-design, such as the Aboriginal Community Controlled Health Services.
Aotearoa/New Zealand has integrated consumer and community representation into key health funding and service delivery organisations, such as District Health Boards. But in other areas both countries have a long way to go.
A summit hosted by the Consumer’s Health Forum of Australia next week (17-19 March) starts off by asking speakers and participants why such reform is needed, and goes on to showcase success, and provide inspiration for future efforts.
This is a virtual event with an international cast of speakers and participants. It’s not too late to register for the Summit (and/or one of the two pre-summit masterclasses) previewed below by Jennifer Doggett for the Croakey Conference News Service.
Jennifer Doggett writes:
After a year in which health systems have shifted gears like never before, the first Australian and New Zealand conference on consumer leadership and experience in health care provides an opportunity to harness the momentum for change and drive future consumer-centred health system reform.
The Shifting Gears summit on 18-19 March, hosted by the Consumers Health Forum of Australia (CHF), will bring leading consumer advocates together with organisations and health professionals, breaking new ground on consumer-centred care.
The two day virtual event will provide an opportunity to learn from innovative projects, share experiences and plan for the future.
Speakers at the Summit come from Australia, New Zealand and overseas and include representatives of the public, not-for-profit and private sectors.
This event is targeted at consumers and consumer organisations, health professionals, health service providers, those who commission and fund health services, and policymakers.
A critical time
The Summit comes at a critical time for the Australian and New Zealand health systems.
While both countries have successfully responded to the initial phase of COVID-19, there are ongoing challenges in managing the pandemic, including the delivery of the vaccine program.
Apart from COVID-19, Australia is facing some major health system challenges, including responding to the findings of the Royal Commission into Aged Care Quality and Safety and the Royal Commission into Victoria’s Mental Health System, as well as implementing the upcoming National Preventive Health Strategy.
Across the Tasman, New Zealand is also undertaking significant health system reforms, including establishing an independent Mental Health and Wellbeing Commission, responding to the recommendations of the Health and Disability System Review and implementing a new Māori Health Action Plan.
Consumer leadership and involvement will be crucial these processes and the Shifting Gears Summit provides a timely opportunity to learn from successful examples of consumer engagement, including projects using co-design models.
Keynotes and plenary sessions
Following a musical Acknowledgement of Country from Indigenous youth vocalists, the Kari Singers, the Summit starts by posing the question Why it is Time to Reimagine Health and Social Care? to four keynote speakers.
Joining from Canada will be Vincent Dumez, Co-Director and Patient Partner, Centre of Excellence on Partnering with Patients and the Public, University of Montreal. Dumez left his job as a consulting firm executive to use his 30 years of experience with multiple chronic diseases to develop the ‘patient partner’ concept at Université de Montréal and advocate for consumer health interests in Canada. He’s now co-leading the Centre of Excellence on Partnership with the patients and public.
New Zealand’s Dr Ashley Bloomfield, Director General of Health, will provide the Aotearoa New Zealand perspective, followed by a joint presentation from Susan Pearce and Craig Cooper, from the NSW Health Elevating the Human Experience project.
Day two kicks off with a panel session on Global Trends in Safety and Quality, featuring Dr Lynne Maher (Ko Awatea, Counties Manukau Health’s centre for health system innovation and improvement), Jeffrey Braithwaite (Australian Institute of Health Innovation) Jennifer Zelmer (Canadian Foundation for Health Improvement), Professor Anne Duggan (Australian Commission on Safety and Quality in Health Care and Dr Christine Walsh (NZ Health Quality and Safety Commission).
Maher will also be part of Future Horizons, the Summit’s final plenary session, facilitated by Suzanne Robinson (Curtin University). She will be joined by a diverse panel of speakers including Kate Mulligan (Alliance for Healthier Communities, Ontario, Canada), youth advocate Harry Iles-Mann and representatives from CSIRO Health and Biosecurity and the Digital Health CRC.
The plenaries and breakout sessions at the Summit are grouped into four general themes:
- Consumers as Researchers
- Consumer-Based Health Care
- Consumer Leadership
- Consumer Enablement
In addition to these four themes, there is a concurrent stream focussed on COVID -19, and a final stream specifically targeted at New Zealand participants. Some of the highlights for each stream are outlined below.
Consumers as researchers
Research is an often neglected area for consumer engagement but the ‘consumers as researchers’ stream highlights a number of successful collaborative and co-designed projects.
These include a project based at the QEII Hospital in Brisbane where a PhD student, two academics and three consumers have been working together to enrich research experiences, processes and outcomes. The presentation on this project will outline how consumer partnerships in research need to start early and include carefully considered strategies for meaningful collaboration.
CHF’s partnership with the Digital Health CRC and leading Australian Universities in engaging consumers in research will be described by Suzanne Robinson (Digital Health CRC). Her presentation covers how to take a consumer driven approach, with engagement throughout the research cycle, for example by taking researchers out of the university environment to engage with the lived experience of consumers and consumer organisations.
The importance of collaboration and co-design with Aboriginal and Torres Strait Islander consumers and researchers in the development of methodology will be highlighted in a presentation from Lilian Daly from the Bureau of Health Information, using the example of of the ongoing NSW Aboriginal Patient Experience Survey.
A joint presentation from Yvonne Zurynski and Jeffrey Braithwaite (both from the Australian Institute of Health Innovation, Macquarie University) will focus on consumers’ role in sustainable healthcare systems and why their engagement is so critical to health systems research.
Consumer-based health care
Social media, organisational strategy and human-centred design thinking are all covered in the consumer-based health care stream.
The stream kicks off with a panel session on how to gear an organisation’s strategy, culture and practices around consumer-centred care, involving representatives from Safer Care Victoria, Western NSW Primary Health Network, the NSW Agency for Clinical Innovation, ACSQHC and the Canadian Foundation for Health Care Improvement.
Victoria Smyth (Western NSW PHN) will discuss how her organisation worked with consumer co-design agency, Kairos Now, to update their Consumer and Community Engagement Framework. She will outline the importance of co-designing guiding documents with consumers and community, to develop language that speaks to the end users and supports better engagement, service design and outcomes.
The impacts of involving young consumers in service design will be discussed by Kerryn Pennell, from Orygen National Centre for Excellence in Youth Mental Health.
Jennie Parham from Consumers Health Forum will give an overview of the Collaborative Pairs project in Australia, in which consumers and providers are paired to develop new ways of working together. Helen Dickinson will discuss the evaluation of the pilot program.
Examples of consumer collaboration on specific projects will be provided by Rawa Osman, (pharmacist and design lead from NPS MedicineWise) and Clare Mullen (Health Consumers’ Council WA).
Impressive consumer leaders and advocates from Australia, New Zealand and the rest of the world will present as part of this stream.
These include Jane Cockburn, Co-Chair, Chris O’Brien Lifehouse Partnership Advisory Council and facilitator of Collaborative Pairs Australia who will give a keynote address.
The implementation of a peer run and peer delivered mental health warmline service in NSW will be described by Irene Gallagher (Being Mental Health Consumers). Ray Newland (Western Health) will discuss his lived experience and journey as a consumer advisor.
Strategies to include the ‘hidden voices’ of frail, homebound and bedridden consumers in health research will be discussed by Penelope McMillan (ME/CFS SA). Her presentation is based on a consumer-initiated and consumer-led collaboration with Flinders University’s researchers sparked by the report, Just Invisible, by disability advocate Ricky Buchanan.
The ANZDATA Registry is a clinical quality registry that collects and produces statistics relating to the outcomes of treatment of those with end stage renal failure. Shyamsundar Muthuramalingam (ANZDATA-South Australian Health and Medical Research Institute) will describe consumer involvement in this registry, including the coproduction of consumer-specific reports.
This stream will also include a workshop Beyond a Tick in the Box: Consumer Leadership in 2021 with representatives from Cancer Voices NSW and Health Consumers NSW.
Clinicians breaking new ground in partnering with consumers to deliver better health care will feature in this stream, including a presentation from Dr Lyndal Trevena, Professor of Primary Health Care and the University of Sydney, whose interests include access to shared decision-making for patients with lower levels of literacy and from diverse cultural backgrounds.
The Australian Digital Health Agency will facilitate an engagement session where participants can share their views on the future directions of digital health for Australia. This session will also feature a digital storyteller and live scribe to visually capture the views of participants.
The presentation from Reema Harrison (UNSW) will shed light on why people from culturally and linguistically diverse backgrounds continue to be excluded from consumer engagement and what can be done to address this. Her presentation is based on research undertaken with consumers from four linguistically and ethnically diverse communities.
The COVID-19 stream includes a well-stacked panel discussion on consumer and community engagement in the current COVID-19 vaccination strategy.
Participants include social scientist Holly Seale, CEO of the Federation of Ethnic Community Councils of Australia Mohammad AlKhafaji, Professor of Global Health and Equity Richard Osborne, Breast Cancer Network Australia Consumer Health Representative Dr Susannah Morris, and GP and epidemiologist Dr Nicole Allard.
Emily Phillips will bring insights from the National Community Controlled Health Organisation to the panel. Australia’s Aboriginal community controlled health sector has been widely acclaimed for its effective response to the threat of COVID-19, due in no small part to its “on the ground” engagement with community, and is now ready to tackle the challenge of vaccination.
The role of state health consumer organisations in the COVID response will be discussed in a session including representatives of four state-based consumer peaks: Melissa Fox (Queensland), Michael Morris (NSW), Danny Vadasz (Vic) and Bruce Levett (Tasmania).
Rob Anderson from Musculoskeletal Australia will discuss the role of consumers in the largest Australian survey of people with, or caring for someone with, musculoskeletal conditions.
Co-design is a major focus of the New Zealand stream with a number of presentations on successful co-design projects supported by NZ Health Quality & Safety Commission.
These include the co-design of:
- a new quality and safety marker for consumer engagement
- a procurement process to support district health boards in selecting a provider for a peer support service, and
- cancer services for Pacific women with endometrial cancer.
Another co-designed project which will be showcased at the Summit is an initiative to improve care for transgender people, from the New Zealand Canterbury District Health Board. This project resulted in key surgical services being made available for the first time in the public system.
The development of Consumer Councils in New Zealand is the subject of a joint presentation by Rosalie Glynn (Consumer Council, Counties Manukau DHB), Jo Rankine, (patient experience lead, Counties Manukau DHB) and Russ Aiton (Chair, West Coast DHB).
There are also sessions specifically focussing on health issues affecting Maori/Pacific New Zealanders, including a session on restraint/seclusion in the mental health system with a Maori/Pacific focus.
Big ideas forum
A highlight of the Summit will be the Big Ideas Forum, facilitated by the ABC’s Ellen Fanning.
This Forum will showcase a series of one minute videos from consumers presenting their ambitious, transformational and achievable ideas to improve the health system.
Just because it’s virtual does not mean the Summit will lack a cocktail hour. From 6-7pm on Day 1 participants can join CHF CEO Leanne Wells in conversation with leading collaborative pairs practitioners Mark Doughty, from the Kings Fund UK, and Louisa Walsh from La Trobe University.
Two pre-conference masterclasses (additional registration required) will give participants the opportunity to explore two key current health consumer issues: health literacy and co-design.
The half day Health Literacy Masterclass will be facilitated by Professor Kirsten McCaffery, Director of the Sydney Health Literacy Lab and cover strategies to improve health literacy, digital health literacy and lessons learned from COVID about health literacy.
The Experienced Based Co-Design (EBCD) Masterclass is a dedicated half-day session led by Lynne Maher, Innovation and Improvement Clinical Director from the Ko Awatea Health System Innovation and Improvement in New Zealand.
This masterclass will provide an overview of EBCD methodology and showcase, through case studies, how consumers, families and staff have used experience based co-design to improve health and care services.
See here for more information about the Summit and to register.
Principal Sponsors of the Summit are: the Australian Department of Health, Australian Digital Health Agency, NSW Health, Australian Commission for Safety and Quality in Health Care.