Greg has had a lifetime of interacting with the health system with both acute injuries and chronic diseases. For the past 4 years, as Secretary to the Board of the Australian e-Health Research Centre, he has been hearing about how e-health will improve his experience of dealing with health problems. This personal perspective suggests that patients will only consider an e-health system a success if it supports them in their treatment options and empowers them to look after themselves — Supplement Editors
The term “wellbeing” annoys me. “Being” well or decrepit is not living. Wellbeing is a health-focused concept and one’s personal health, important as it is, and however widely it is defined, is an enabler, not a reason for living. Many times I’ve had people say to me “your health is your greatest personal asset”. Nope, self-esteem, a sense of purpose, a referential set of values, and a sense of belonging, supported by constructive relationships — these are our most important assets. We cope well with dodgy health when those basics are there.
There’s no doubt that a robustly positive attitude is a valuable asset in the sorts of circumstances I’ve faced. However, it’s important to keep it in perspective. If asked to allocate percentages as to why, so far, I’ve always ended up in the happy tail of the Gaussian curve, I’d say good treatment accounts for 15%, good attitude for 5%, and good luck for 80%.
But I also know that Fortuna is a capricious goddess, and that life is not priceless. Prevention, while not always possible, is the key — prevention, in which individuals and their communities take the lead role and are given the tools to do so. But how?
In 1969–1970, the renal transplant unit at Princess Alexandra Hospital, Brisbane, had an admirable approach — “patient heal thyself”. Self-reliance was the key, right down to sometimes taking one’s own blood pressure while in hospital for dialysis. I was encouraged to be independent of mind, and that was 40 years ago.
When I emerged from transplant surgery, I immediately took the view that I wasn’t going to live my life focusing on my one notable medical oddity. So, no transplant societies, no transplant games, no involvement in the ongoing life of the transplant unit or its heirs and successors. I do make an exception for the occasional PR appearance because I know the benefits that accrue from the program. And this happy old rationalist would also admit to himself, as I’m doing now to you, that there was, and is, an underlying superstition that I might cruel my good luck by talking about it or parading it too much.
I made another decision . . . that I wasn’t going to live my life constantly explaining myself to people. I’d had quite enough of that during dialysis, fending off offended suburban hosts and hostesses when I wouldn’t — couldn’t — eat or drink anything they offered me, to the point where I decided not to go out anywhere. You can easily start to live your life through your medical condition — that is the path of least resistance, because everyone wants to talk about it. The ready and increasing availability of web-based information can feed that interest, as can blanket use of particular interventions. An example is counselling, but with my lengthy experience at the other end of the scalpel, my domestic support team already know how to get me through these things.
Even in this relatively enlightened day and age, I’m occasionally given to fuming about the approach taken by some frontline health staff. Why do some nursing staff still treat patients like children, including using baby talk? Why do some medical staff still treat patients as if they have an intellectual disability? Why do some clinicians get personally offended when I decide to take a risk and ignore some of their advice? Why are these clinicians utterly uninterested in any rationale that I try to offer by way of explanation?
My modus operandi when confronted with an acute or chronic health issue is:
Get the best acute care possible.
Invest in recovery (time, resources, whatever); it’s the most effective way of maximising all positive outcomes.
Learn about the full range of recommended long-term care (eg, regular check-ups, medication, exercise, physical or dietary issues, etc).
Learn about the mechanics and chemistry of what has happened and will happen, but only to the extent of a general understanding sufficient to make a judgement about when you should pull the “doctor” switch, and when you can take a reasonable risk in riding something out.
Make a decision on the minimum necessary ongoing care and build it into the background of your life (like cleaning your teeth), wear any downside consequences, annoyances and diversions, and get on with your real life.
In other words, take a generic, balanced, risk-mitigation approach.
I’ve never consciously felt a particular need to be “empowered” by anyone, but I suppose some might view my modus operandi as evidence of self-empowerment. Empowered and all, I still rely heavily on the availability of high-quality expertise and facilities. Empowerment sounds great, but it is a debased PR term these days.
Non-trivial problems usually require simple strategies and complex solutions. I’m comforted by the fact that a national electronic health record is looming, that the prevention agenda has the profile that it does, and that science that supports productivity is gaining more traction.
None identified.