If you want to be called an e-patient, you have to do more than communicate online about your health care. You must be engaged and empowered as a patient, says Dave deBronkart, also known as “e-Patient Dave.”
In fact, he adds two other e-words to what makes an e-patient: equipped and enabled. According to his definition of the two most important terms, an empowered patient speaks up, expresses wants and is responsible for her or his care choices. Engagement means being actively involved and not a passive “care receptacle.”
deBronkart learned about being an e-patient the hard way. He was diagnosed with metastatic renal cell carcinoma in 2007, with metastasis to his lungs, femur, skull and tongue. He had surgery and received High Dosage Interleukin-2, and has been in the clear since six months after his diagnosis.
He had no symptoms, and might not have found out about his cancer when he did were it not for his persistence before he even met with his physician. He had a sore shoulder and wanted a referral to a specialist in advance. An X-ray revealed that his shoulder was fine, but he had suspicious lesions in his lungs. Once his treatment began, he read his medical records and tracked his progress online and formed a social support network for himself via the CaringBridge.org website.
As co-chair of the Society of Participatory Medicine, deBronkart describes himself as someone who “started a business of activism in this field. I’m somebody who was an engaged, empowered patient before the term existed.”
He does give plenty of credit to his physician, Daniel Sands in Boston, but notes that he shopped around for a primary care doctor until “I found somebody good for me.”
There are multiple Internet sources for information about medical conditions, including burgeoning online communities in which patients – who become experts themselves – share ideas about what has worked and not worked for them along their health-care journeys.
As far as deBronkart is concerned, the more information, the better off every patient is.