Dave DeBronkart, also known as e-patient Dave, is an author, blogger and one of the world’s leading advocates for patient engagement. His goal has been to improve health care by rebalancing the relationship between doctors and patients. Patients should not be intimidated by the antiquated notion that doctors know best and patients should do what they are told, he said. Patients should ask questions, get a copy of their own medical records and be well-informed every step in their journey to wellness.
A patient turned advocate
In 2007, he had gone to see his physician for an achy shoulder. Then the doctor called with his X-ray results.
“He said ‘your shoulder is going to be fine but there’s something in your lung,’” recalled deBronkart.
Tests would show Dave had five tumors in his lungs and two in his right kidney. His brain, left leg and tongue also were affected. He was diagnosed with an aggressive cancer - Stage IV, Grade 4 Renal Cell Carcinoma.
Sharing his experience with Tufts MC
“As someone who seeks information, I searched and found a study that showed median survival was 24 weeks,” he said to an audience of about 100 Tufts Medical Center employees during Patient Experience Week. “The hardest part was sitting down with my daughter who had just gotten out of college to tell her the news.”
“There must be a partnership between doctor and patient. The real problem is there is no billing code for working together,” said deBronkart.
Information is like a nutrient
Dave’s doctor prescribed treatment – surgery and interleukin, a powerful immunotherapy drug. He also prescribed ACOR – an online patient community for cancer patients.
“Information is like a nutrient,” he said. “Social media can improve outcomes because of the information you get from other patients.”
Dave’s tumors began to shrink and his cancer was gone within six months.
Dave now speaks around the world encouraging clinicians to share details with their patients. He often says “Save my life, and I will be forever grateful. Show me how I can help save my life, and I will be even more than grateful.” He urged those in attendance at Tufts MC to think about how they could form a partnership with their patients to help health care achieve its full potential.
“My oncologist later told me he wasn’t sure I would have survived if I hadn’t been so informed,” he said.