The enthusiasm, expertise and variety of people and projects at CHF’s Shifting Gears Summit was proof of what Vincent Dumez said in his opening keynote: this is a movement.
The conference made it clear though that this is more than asking for consumers to have a seat at the table. It’s about patients and communities shaping, driving and being active participants in their health system. It’s also a cultural revolution, advocating for change in relationship dynamics and the ways we conceptualise health and healthcare. The ways this patient-driven movement has already influenced and changed our complex healthcare systems, whose foundations extend back over thousand of years, is very impressive. Based-on last month’s summit, it’s only the beginning.
Movements are underpinned by shared values and beliefs, and a summit with attendees and presenters from such diverse backgrounds is an excellent opportunity to examine them. Knowing a movement’s values is helpful for the same reasons it is helpful to know your own personal values. It provides a framework for making decisions and taking action.
Conversations around different forms of knowledge were sprinkled throughout the summit. In addition to clinical knowledge, we value the experiential knowledge that comes from being a patient. We know that experiential knowledge is essential to the health care team but that it also provides a valuable, unique view across the health. We understand that communities are holders of knowledge and there is value in alternative knowledge systems, particularly Indigenous ways of knowing.
We reflect on what we do and how we’re doing it. As both consumers and clinicians, we reflect on our role in the health system, our experiences, and we ask ourselves ‘how can this be better?’ Through the summit, there was an emphasis on reflecting on the language we use and how it influences the way we think about dynamics between people.
This is a very future-focused movement, and an optimistic one. We value reflection, and then follow it up with ‘what’s next?’ or ‘how do we take this to the next level?’ We drive change, are excited by new ways of doing things, and embrace innovation.
We sit in and share vulnerable spaces. Whether that’s as consumers who are sharing our stories and experiences, clinicians embracing the vulnerability of new ways of working, or pioneers bringing the consumer perspective into new spaces. During the summit, we addressed complex questions and we acknowledged that we need to get comfortable with being uncomfortable so we can have the difficult conversations that will move this movement forward
This isn’t just a community of people who advocate for action; this is a community of people taking action. All the Summit’s streams were full of projects, initiatives and partnership walking the talk on consumer engagement. It’s clear we don’t wait for everything to be perfect before we get started. In fact, our practice is iterative and perhaps that is an important contributor to our success.
Inclusivity and diversity
As a movement, it’s clear that we care about making inclusive, safe spaces. We value the diversity of knowledges that people from different backgrounds bring and acknowledge that it is our responsibility to make space for everyone. The truth is that we don’t always get it right but as reflective, action-oriented people, we’re always improving.
As mentioned earlier, values and beliefs are an important element to creating structure for a movement. We have other elements such as consumer engagement models, embedded expectations such as NSQHS’s Partnering with Consumers Standard, and number of organisations committed to meaningful consumer engagement. But there’s a lot more than can be done, which is why the creation of a health consumers academy is so important.
In the month since the summit, I have also been reflecting on what this all means for young health consumers. Young people share many of the same values as above, but like other communities such as LGBTQI+ people or Aboriginal and Torres Strait Islander, we may prioritise them differently or have other important values that are missing. For example, I believe young people would put an environmentally responsible health system very high on their priorities list as consumers. This is why including young people in spaces such as CHF’s Shifting Gears Summit is so important.
It’s also important because there is a lot of opportunity for change through educating young people. There was a number of important conversations around the need for ‘wise consumers’ at the Summit. Wise consumers are people who can ask the right questions of their doctor, are an active member of their healthcare team, and can navigate the healthcare system. But how does someone become a ‘wise consumer’. In my experience it’s often through trial and error, and lots of googling.
It doesn’t have to be that way though. We can teach young people at school about the health system and how to navigate it. We can instill in them that they have a say in their own healthcare and are partners with their doctors. An entire population of wise consumers whose health literacy is prioritised in school could improve non-urgent attendance at emergencies, medication compliance, and the ability for consumers to work collaboratively with clinicians.
There’s still a lot that needs to be done around young people being involved in the health consumer movement. Luckily there are a lot of young people and organisations, like CHF’s Youth Health Forum, who are out there already working on it.
The Summit showed me just how many people and how many projects are going on in this space, but I also learned that we’re just at the beginning. Like the future-focus, action-oriented people we are, it’s time to put the learnings from the Summit into action.
About the author
Roxxanne MacDonald is a Young Leader with CHF’s Youth Health Forum and was appointed to the CHF board in 2019, She is passionate about addressing social determinants of health, co-designed alternative models of care, and service design in healthcare. Roxxanne is driven by her own lived experience of mental-ill health and being a young carer, as well as the stories and experiences other young people share with her.