A consumer’s perspective of health system transformation
As part of the recent launch of Health Voices Victoria’s first strategic plan I was asked to speak about the future of lived experience in health. As someone not used to public speaking, and as someone who is not an established lived experience academic or expert, it felt daunting to prepare my presentation. Could I do it justice?
While I’m no stranger to the health system and have been a passionate consumer advocate for over a decade now, I’m aware there is much I don’t know. I have immense love and respect for all the different people who have been, and are part of, and support the wider lived experience and consumer movement in health: consumers, engagement practitioners, health professionals, researchers and more.
I thought of the many people currently navigating health challenges and the stress that often brings, stress that could be reduced with better designed health systems. I thought of consumers who have insights that could improve our health systems, but who don’t yet have a platform to elevate their voices. I thought of healthcare professionals who want to improve healthcare but are themselves experiencing stress and burnout. And of researchers who are deeply invested in doing ethical lived experience-led research but constrained by institutional barriers. How could I honour the greater collective?
I began writing. Post-it notes and scraps of paper flowed over my bedroom floor. I approached it from one angle and then another, but nothing felt right. Panic started to set in as the day of the talk arrived and I still didn’t’ know what I would say.
So, I came back to what lived experience, at its core, at its simplest, means to me.
Here’s an adaptation of the speech I gave.
When the system is rushed and inflexible
Several years ago, at a routine dental check-up, I was told my young daughter had advanced tooth decay – she had gone longer between checkups due to the pandemic. Our local dental practice was a typical one: white walls, a clinical feel, and rotating staff who were friendly enough but always seemed stretched for time and without much agency. The dentist was kind but worried that my daughter wouldn’t be able to tolerate having her tooth drilled and filled in the chair. It’s true, my daughter was anxious, but I thought she could handle it if we took it at her pace. But there was little opportunity to slow things down and let her settle. The dentist didn’t want to attempt the filling if there was a chance my daughter wasn’t going to do exactly as she was told. She strongly recommended a shorter procedure that didn’t require drilling. I consented and we went ahead.
The cost of care that isn’t personalised
While the procedure itself was quick and easy, my daughter experienced pain and discomfort for a few weeks afterwards while her mouth adjusted to the altered tooth. A few weeks later, she developed an abscess. Back at the dentist we learned the procedure had failed and her tooth had to be removed.
By this point, my daughter was less trusting and more anxious at the dentist. We were advised to go to the dental hospital or be referred to a private paediatric dentist for the tooth extraction. I took her to the dental hospital the next day. After waiting for several hours, she was seen. But, once in the dental chair, she refused to open her mouth. She was no longer cooperating! In the end, I arranged an urgent appointment with a paediatric dentist, and her tooth was removed under general anaesthetic.
A different kind of care
After this experience, I knew we needed a different approach.
I found a small dental practice nearby that did things differently. Our new dentist was calm and patient, and we never felt rushed. There was a TV on the ceiling and at the start of every visit our new dentist would invite my daughter to choose which cartoon she wanted to watch as she settled into the dentist chair, even if she took a while to decide. At the beginning of every appointment, they would remind my daughter “You are the boss in the room, all you need to do is put up your hand and I’ll stop”. Our dentist explained each procedure in child-friendly language and would show my daughter what to expect by demonstrating the dental tools on her finger.
Small details matter
Our dentist wore friendly colourful scrubs and there were toys in the room for my daughter and her sisters to play with while waiting. At the end of each appointment our dentist would bring out a box of inexpensive trinkets and stickers for her to choose something from to take home. They even considered my daughter’s experience at home, suggesting I get my daughter an electric toothbrush so she could get used to the sensation of vibrations and noises in her mouth in a safe and familiar setting to make the dental experience less stressful.
Within months, my daughter was comfortable enough to sit through cleans and even have a filling done. Our dentist and I were both amazed at the transformation in my daughter.
Practice shaped by curiosity and openness
I’m no stranger to the healthcare system. Decades of living with chronic conditions that require frequent medical appointments has opened my eyes to good and bad health care. I chatted with our dentist, keen to understand their approach. They shared that they too had young children (their own lived experience) and their best friend was a mental health nurse who was knowledgeable about trauma-informed care and the lived experience movement. Interested, our dentist took initiative and sought out short courses and professional development in trauma informed care. And our dentist explained that their practice manager was supportive and trusted our dentist to test out new ideas.
If my daughter had experienced this care earlier, would we have reached the point of needing a costly general anaesthetic at all? What might have been saved — in money, time, energy, and resources — for our family and for the health system?
As I sat on the floor, scribbling my thoughts down on paper in preparation for giving the speech, my daughter walked by and asked what I was doing. I explained and asked her if it was okay to share the dentist story and asked her how she would explain it in her own words.
Without any hesitation, my daughter summed it up as: “The other dentist, their work was fixing teeth. But with my new dentist, it’s fixing teeth but it has to be in a way that’s nice for children”. I couldn’t help but feel both proud and humbled. She’d crystalised the difference so simply and easily.
I believe my daughter will have a more positive experience of healthcare in the future because of the trusting relationship she’s developed with her new dentist.
At a system level, it makes me wonder how much better care could be delivered, and how many scarce resources could be saved, if lived experience guided the design of our health systems. And what might it mean for the wellbeing and satisfaction of the professionals working within them?
Health system transformation is within our reach
Thinking about how to bring about transformational change in healthcare is daunting. Healthcare systems are complex adaptive systems that are resilient and also inherently resist change. But transformational change is possible when redesign is centred around shared values.
My dentist story is one example of transformation change. It can happen surprisingly easily and quickly under the right conditions. To me, this is an example of humanising healthcare. This means:
- consumers have a positive healthcare experience
- there are good health outcomes
- there is effective use of finite resources
- and people working in the health system feel energised in their work and want to stay in their roles because it’s personally rewarding and sustainable.
Transformational change is grounded in lived experience
I’ve come across many other positive stories of transformational change in the healthcare system, some small, some big. I know of a new dietetics practice in Melbourne that has fundamentally grounded and designed its service in the values of the lived experience movement. Internationally, Southcentral Foundation’s Nuka System of Care is a brilliant example of successful large-scale healthcare redesign. Importantly, the redesign was community-initiated and guided by lived experience. It’s been so successful that the Australian government has taken notice and has adopted some aspects of their model into Medicare.
What these examples of health system re-design have in common is lived experience is their guiding compass AND organisations are supportive and enabling of staff who want to improve systems.
With our powers combined! Creating spaces for clinical and lived experience expertise to mingle
I’ve been in a lived experience role at Health Voices Victoria for a year now and it’s been a privilege – it’s been restorative and inspiring.
For ten challenging years as a volunteer consumer advocate, I was often not heard and often felt disillusioned at lost opportunities to improve care. Now, I feel I have a sense of what the front of the wave of the lived experience movement looks like and it’s everything I hoped it would be.
To draw on the words of UK Patient Leader, David Gilbert:
“[Patient and Carer Partners] were more than storytellers. They were not there to recount their own experiences so much as be ongoing partners in the room, able to reframe problems, generate new solutions, model collaborative leadership and shift dynamics.”
A challenge and opportunity that lies before us here at Health Voices Victoria is to find ways to involve consumers and community members more directly, so they have a platform to bring forward ideas for improving health systems. If you have thoughts about how we can do that well, please come and chat to us. We’d love to hear from you.
Looking to the future
So, looking to the future what would I like to see in five years’ time?
I hope to be celebrating a growing group of people with diverse experiences in lived experience roles at Health Voices Victoria.
I hope more Victorian health organisations have continued to shift their internal cultures, becoming more transparent, more reflective, and more open to questioning long-held ways of doing things.
I hope meaningful consumer engagement in health services will continue to blossom — you can only find better and different ways of doing things when you work with people who think differently to you.
And I hope we can showcase many more stories of lived experience-guided transformational change within the Victorian health system.
What can I do to support transformational change in health?
If you are working within health and related sectors, look for small, achievable shifts that can help create an oasis of change in your organisation. Ask yourself:
- What cultural shifts are within my control and sphere of influence and are personally sustainable?
- How could I show up for work in a way that would improve my organisation’s internal culture?
- How could I create more opportunities for staff and consumers to have honest conversations about what’s working well and what needs to be improved?
- How could I create more opportunities for consumers and people with relevant lived experience to be embedded within my organisation or my research?
- How could I embrace and elevate lived experience and widen lived experience leadership?
If you are a consumer and have a role as a consumer advisor within a health organisation, consider:
- How can I open the door for other consumer advisors to come alongside me and have a voice?
- How can I learn more about the wider lived experience movement?
In ending this article, I ask myself, “How can I use my privileged position within a university to seed a small oasis of change not afforded to many consumers and lived experience leaders?”
One thing I can do is help to open-up conversations and elevate other lived experience voices. So, please join the conversation when you see this article shared on our social media – agree, disagree, or present an alternative perspective. And if you are a consumer and would like to collaborate on writing an article for a future edition of the Health Voices Victoria’s newsletter, ‘The Chorus’ , please get in touch at healthvoicesvic@deakin.edu.au
