Making it real – the impact of consumer co-production
Co-production and co-design in healthcare is a personal battle cry for me. It’s what gets me up in the morning, what sees me attending public health forums and has me tweeting voraciously at two in the morning.
To me, it’s an ethical imperative that those whose health is to be cared for – the public – have the most input into the design, development, provision and subsequent evaluation of tax-payer funded health services.
I wasn’t always this way. As a mother of three healthy children, I’d had my fair share of the common, garden-variety interactions with the Australian healthcare system – the vaccinations, lacerations and complications. But it wasn’t until the arrival of my fourth child, Mitchell, that I was suddenly catapulted into the parallel healthcare universe of having a child with a chronic, complex condition.
Rather than the rapid (and usually correct) diagnoses of childhood illnesses I’d enjoyed in the past in the comfort of our GP’s surgery, I had to endure the lengthy, frustrating and at times patronising experience of trying to convince medical professionals that ”something was wrong” with my son.
I felt first-hand what it was like to go through the endless appointments, testing and referrals associated with trying to pin down a diagnosis. How frustrating it could be when samples went missing, teams didn’t communicate or doctors discounted evidence coming from home. But we got there, eventually.
This experience – and that of subsequently caring for and advocating on behalf of a child with serious, complex and ongoing medical needs – led me to become a consumer representative. I became involved in ensuring that healthcare organisations listened to and respected their consumers, recognising the crucial role they play in designing safer, more efficient services that are responsive to patient needs.
And what patients most need is to know what’s wrong with them as early as possible. Enter the knowledge that science has built up over decades around our chromosomes, DNA and genetics. The latest is genomics: the study of all the more than 20,000 genes that go into making up our bodies. Looking at the genome can help diagnose illnesses more quickly and help understand what treatment or management might be most effective for each individual.
Many organisations around the world are evaluating the use of genomics in healthcare, and in Melbourne ten member organisations have come together for this purpose, forming the Melbourne Genomics Health Alliance:The Royal Melbourne Hospital, The Royal Children’s Hospital Melbourne, The University of Melbourne, The Walter and Eliza Hall Institute, Murdoch Childrens Research Institute, CSIRO, Australian Genome Research Facility, Peter MacCallum Cancer Centre, Austin Health and Monash Health.
These leading Australian health and research organisations, with the support of government, have tasked themselves with planning how patients, clinicians and researchers can benefit when genomic medicine is provided within the healthcare system.
So imagine my delight when I heard, almost three years ago, that top of the list for the newly formed Melbourne Genomics Health Alliance was the formation of a Community Advisory Group (CAG), which I promptly applied for and was accepted onto.
Recently, Melbourne Genomics announced key findings from the first two years of our work, which offered genomic sequencing to 315 patients with one of five medical conditions. We found that when doctors provide genomic sequencing to patients: at least 6 times more patients receive a diagnosis; patients receive care tailored to their individual genetic make-up; and patients can have fewer tests because genomic data can be stored and analysed again and again.
Importantly, we have provided evidence that, for certain medical conditions, genomic sequencing used within the healthcare system can replace other tests – resulting in better use of precious healthcare dollars.
The story of patient Ginger, the first person in Australia and 42nd in the world to be diagnosed with her genetic condition, was highlighted in announcing the key findings. For Ginger and her family, a genomic sequencing result has meant avoiding years of potentially protracted, invasive and expensive testing. Melbourne Genomics’ findings regarding infant patients with genetic syndromes, like Ginger, show that for these children, genomic sequencing resulted in five times more diagnoses at a quarter the cost per diagnosis.
As can be seen from just this one case, genomics is most fundamentally about patients. People. It’s personal, and it’s riddled with ethical, legal and social implications. With my consumer representative hat on, thoughts spring to mind like: “just because we can doesn’t mean we should” and “nothing about us without us”.
Any worries about the perceived relevance of what our CAG may have to offer Melbourne Genomics’ ground-breaking work were quickly resolved. At one of our first meetings we asked that an Impact Register be established to track our input, its uptake, and any impacts observed by the project team.
And here’s the important bit: by tracking our input and its subsequent impact, we were then able to produce a report showing the specific value we brought to the table.
- During 2014 Victorian election campaign, CAG helped lobby both major parties to commit $25m funding to the Alliance
- By having significant input into how patient consent was approached, delivered and understood in this Research meets Practice project, more than 90% of participants so far have agreed to share their genomic information for research purposes
- Providing access to actual patients and their stories through CAG patient networks ensured media uptake of press releases, driving public interest in the Alliance
- By working with the Information Management team to identify areas of the system that would be of highest priority to patients, time was saved by factoring them in at a foundational level
The report, “An ounce of prevention” was circulated to the CEOs of all ten Alliance member organisations. It provides a short, sharp view of the breadth, depth and impact of community contributions to the project thus far. We hope the report also acts as powerful evidence for increasing co-production initiatives within each of the member organisations.
I believe that, as consumer representatives, we should start tracking our personal input and its impact whenever possible, and then share the results broadly. It’s one of the most powerful ways we have to legitimise and grow co-production within Australian healthcare.