I am now in week 5 of the eHealth MOOC I wrote about in my last post.
It has been a revelation.
The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.
Before we go further, meet e-patient Dave deBronkhart. His story cuts to the chase: it saves me writing and it saves you reading. It only runs for 16 minutes, and its great!
What’s the key message? If Dave saved his own life after his healthcare community let him down, so can we.
An e-patient is a type of expert patient. One who uses online resources to get knowledge, to connect and share with other people in the same situation, who is action-oriented; a believer in self-care and their own abilities to contribute to their health and well-being.
According to Tom Ferguson, an American doctor who coined the expression, an e-patient is equipped, enabled, empowered and engaged.
In short, when we become an e-patient, we become our own guardian angel.
Most of us BigD-ers are well on the way to e-patient-hood. Already we take the time and make the effort to understand our health problems and we want IN on our healthcare, ideally as collaborating partners.
And we are not alone; we are part of a worldwide movement that is becoming a force for massive change.
But not everyone it there yet. This blog still receives a steady stream of anguished and angry comments on one of its most disturbing posts: Dialysis, fistulas and fatal haemorrhages.
Since 2011, more than thirty grieving relatives have written about a loved one whose fistula was infected or blocked, or became fragile and weepy, who was ignored and fobbed off by an inadequate health care service until they died, often in a pool of their own blood when the fistula ruptured. Here are just two examples so far this month:
Marlene wrote: “My 40 yr son was found on his bathroom floor bled to death from a ruptured and infected fistula, 4 days after a declot procedure. He was trying to tie his tee shirt around his left arm to stop the bleeding. He had a declot procedure done on the 11/28/14. The vascular doctor who performed the procedure contacted my son’s nephrologist at the dialysis center and informed him of the condition of his fistula and that he needed to have it taken care immediately.
My son was discharged home to die. The vascular Doctors should have called the ambulance and sent him to the hospital for immediate surgery. This is a situation you do not put off. This is life and death.
The police found him dead on his bathroom floor, for crying out loud. Mr D where do we go from here. He has small children who need answers. Some doctors do not listen attentively to their patients. What’s my next step for the sake of my grandchildren?
Juana wrote: “My daughter’s port fell out they put another one in Saturday the 25th 2015 took her to the hospital. One week after they put the new port in they said that she is very sick and she had an infection, She died on the 27th 2015. I want an answer. I don’t understand. My baby was 23 years of age. Why didn’t they know about the infection at dialysis? I need an answer; what do I do?”
While these dreadful outcomes and the others in the post are mostly the result of healthcare inaction, it could also be because our guardian angel, our one resource that cares for us above all else, our e-patient, was missing.
All BigD patients need to become e-patients. No more a passive recipient of care, going to dialysis, closing our eyes, putting out our arm and hoping for the best.
Imagine a world where every BigD patient is backed up by their e-patient guardian angel. How many infected and ruptured fistulas, let alone horrible deaths would happen then?
