REGINA – A health care quality summit in Regina this week is looking at how to better include the most under-used member of the health care team – the patient.
That’s why Dave deBronkart is taking part.
Six years ago deBronkart, who is from the Boston area, was dying from Stage IV kidney cancer. He joined internet groups and researched the different options. That was how he found the treatment that ultimately saved his life.
“The treatment itself can kill the patient,” deBronkart said. “There was no advice in the medical literature on how to survive the side effects. But I got that from 17 other patients who’d been through it.
“Today my oncologist said he’s not sure I’d been alive today if I hadn’t been so informed and prepared.”
Several years later he discovered the ‘e-patient movement’. It stands for empowered, engaged, equipped, enabled and expert. They were five words deBronkart took to heart while battling cancer. Today, he is known as ‘e-Patient Dave” on internet sites.
Dr. Susan Shaw, the chair of the Saskatchewan Health Quality Council, which is hosting the summit, acknowledges the health system can do a better job of meeting the needs of patients. One way is making sure patients know they have a powerful voice.
“Often I think patients come into our system and they’re so overwhelmed by the complexity of the system and the illness they may be facing or the help they’re looking for that they don’t feel like they’re able to speak up,” Shaw explained.
However, some patients take it too far. Researching an illness can take over their life or develop unwarranted fears that their symptoms are a sign of something much worse. But Dr. Shaw, said it is a good thing when patients do some of the leg work and discuss it with their doctors.
“The more you work with patients, you realize they know more about their health issues than we do and they know more about what they want than we ever can,” Shaw said.
DeBronkart travels the world, creating empowered patients wherever he goes.
“What I speak about is patients being an active partner in medicine instead of like a passive car in a car wash that you spray things on,” he explained.