There is a frontier at the edge of knowledge…
…and at that frontier, humanity is constantly building outward, and constantly discovering new needs. In that gap, between here and the future, lies uncertainty and opportunity. We depend on legitimate experts to be our guides – but when the experts say “There’s nothing more we can do,” what do you do?
This is the story of ten ordinary people – without medical training – who, when faced with that answer, got to work and extended medical science, for themselves or a loved one. Some of them solved an unsolvable diagnosis. Some found the genetic cause of their disease, where scientists could not. Some literally invented treatments and devices. They changed what’s possible for healthcare to achieve its potential.
It’s real. And it forces a change in our paradigm of patient.
A year ago, when the book was in concept stage, the National Network of Libraries of Medicine invited me to talk about it. When you have time, have a look – about 45 minutes long.
“If you live long enough, things change”
I know this well: I’m a Stage IV cancer patient who almost died in 2007. The enormous changes we’ve seen since then extend to what’s possible in medicine, too.
A lifetime ago, only scientists and academics could extend that frontier, because doing so requires access to knowledge and tools. Today both are available to many, not just the elite, in ways that simply weren’t possible a generation ago. Predictably, when the ability to learn became real, some people who were activated and motivated, and had sickness in the family, picked up their shovels. And some succeeded in adding to what’s known at the frontier. They created new knowledge – extending science – and some have even created new treatments and products.
- Sharon Terry found the genetic cause of her children’s disease – their “doctors didn’t think two lay people could have anything to do with research other than carry their briefcases”! And this was back in the 1990s. Not only did they find the cause; today she runs the Genetic Alliance. See her TEDMED talk Science didn’t understand my kids’ rare disease until I decided to study it.
- Tal Golesworthy proposed, designed, and helped in the production of a new surgical treatment for his risk of aortic aneurysm. It worked, and has been used on scores of patients. (Coverage: BMJ “When Patients Innovate“; Mosaic science site “The Engineer Who Fixed His Own Heart“)
- Jill Viles, while still in college, divined the cause of her two unusual diseases that combine into her extremely rare muscle-wasting condition – and how it makes her a near-twin to a (paradoxically) muscular Olympic sprinter. Along the way, she may have also saved her father’s life. Pro Publica: “The DIY Scientist, the Olympian, and the Mutated Gene“
Who are these people?? How have they done this, and why doesn’t everyone know it’s possible? And these are just a few – there are many more.
They raise exquisite questions:
- How can it be that people without medical (or even scientific) training can extend science beyond what their doctors could offer?? How is this possible??
- What does that say for our assumptions about who can extend science?
- Doesn’t it make sense, then, to give patients unrestricted access to their full medical records and data, if they too want to help? On what grounds could we justify holding their data back?
If this seems extreme, consider: these are not people with a bad cold – they’re dealing with potentially lethal or life-limiting conditions, and science has reached the end of its wits. When that happened to them, these people didn’t give up – they said “Let me see if I can help.” Or demanded to be given a chance – to have their help accepted.
Superpatients is the story of many such people
… what they’ve done, and what they continue to do. I call them superpatients because while the traditional patient goes to the doctor for expertise, the superpatient doesn’t stop there. When science says “We’re out of answers” and the patient’s still sick, superpatients say “Let’s see if I can help.” And sometimes, they can: even if they’re not scientifically trained, superpatients sometimes succeed in their search.
It is the thesis of this book that if medicine is to achieve its potential we must understand this change. How else can we possibly take advantage of today’s new reality? Can any industry succeed today – cars, TVs, food or anything – if it’s stuck in the twentieth century? Or if its authorities have outdated facts? Yet that is what we too often see in medicine: doctors and businesses and policies that discourage patient contribution, particularly by limiting our access to information.
We can help end these practices by understanding the evidence that patients can, do, and will extend that frontier. Once we accept this new reality, it becomes indefensible to hold back the change. There are no guarantees – creating knowledge is hard – but when all other options are gone, you too might want to know of superpatients who’ve tried and achieved something nobody’d ever done before.