I want to be clear: not all patient communities are great, any more than online communities of any sort. But when a good one gets going, boy is it sweet.
— Dave deBronkart
I'm an e-patient: equipped, enabled, empowered, engaged. I'm no clinician, but I do everything in my power to help them, to play an active role in my own care, and even in the design of care.
In other industries, value is defined by the ultimate stakeholder - the one who benefits, or not, from the service. We should do the same in medicine.
One of the most stubborn barriers to patient empowerment is the cultural assumption that since the way professionals learned was hard, you must need to be really smart, and you need to be taught in a carefully thought out, methodical sequence.
In my book, 'Let Patients Help,' one chapter is titled 'Let patients vote on what's worth the cost.' That's sensible, right? In other industries, consumer preference is a key determinant in prices.
Think about the possibility: why is it that iPhones and iPads advance far faster than the health tools that are available to you to help take care of your family?
Where does my body end and an invader start? And cancer, a tumor, is something you grow out of your own tissue. How does that happen? Where does medical ability end and start?
I've been online since 1989; I was sysop on several CompuServe forums.
I advocate for a totally new view of the role of the patient: patient as engaged partner, not passive recipient.
The baby boomer surge is forcing society to face decisions about costs - and particularly what is valuable. It's senseless for clinicians and governments to bear these choices alone; a sad effect of needless paternalism is that it places a false burden on responsible people.
Value in medicine depends on information - as I said in 'Let Patients Help,' 'People perform better when they're informed better.' It follows that to make patients and families more effective in care, they need to know more.
Too often, hospital staff are incented by management to get work done without worrying about care, and clinicians are too often not even trained to think about care.
Me being me, I put the numbers from my hospital's website from my tumor sizes into a spreadsheet.
As I've met clinicians in my travels, time after time I've been inspired to hear why people went into medicine: to apply their way-above-average minds (and hearts) to work that's beyond most people's capacity, and perhaps save a few lives.
Please, let patients help improve healthcare. Let patients help steer our decisions, strategic and practical. Let patients help define what value in medicine is.
Diagnosed incidentally with stage IV, grade 4 metastatic renal cell carcinoma, I had bone metastases in my femur (which eventually fractured), ulna, and cranium; five metastases in my lungs; and muscle metastases in my thigh and tongue. Yet six months after diagnosis, my treatment ended: I've not had a drop of anything since.
Careful writing is important for many reasons, not least that intelligent but hurried reporters will trust the presser, resulting in a cascade of secondary damage.
Ever tried to get sleep in a hospital? Ever wonder if anyone even taught them what care is? Some hospitals are great, but some sure aren't.
I've been online long enough to know if I don't like the first results I get, I go look for more.
