This morning, Dr. B and I went to Grand Rounds at Beth Israel Deaconess Medical Center (BIDMC) to hear Dr. Daniel Z. Sands & “e-Patient Dave” deBronkart discuss: Illness in the age of ‘e’: A case study in participatory medicine. Three years ago, Dave was going to Dr. Sands for a routine physical and mentioned that he had some pain in his right shoulder. On the x-ray, the shoulder looked fine, but there appeared to be something nearby in the lung. That “something” turned out to be Stage 4 (metastatic) renal cell carcinoma – a malignant tumor of the kidney which had spread to his lungs and bones. Being Internet-savvy, Dave immediately started “Googling” like crazy, trying to find out as much as he could about the disease. Overall the search results were pretty dismal, with survival rates at close to zero, and life expectancy of about 24 weeks. However, one site that Dr. Sands had recommended, www.acor.org (which stands for Association of Cancer Online Resources) immediately put Dave in touch with others in the same situation. He learned that for the most up-to-date care, he needed to be treated at a “center of excellence” for that specific cancer. Fortunately for Dave, that turned out be right where he was – at Beth Israel. He was put on high dose Interleukin, and three years later, he is cancer-free and feeling fine. Dave also used a BIDMC website, www.patientsite.org, which allowed him to see all his lab results, share them with others he felt might be able to help him, and to directly communicate with his physicians. Dave has since become an e-patient advocate and writes a blog called The New Life of e-Patient Dave. You can also follow him on Twitter.
Dave is an example of what is becoming a new movement in called Participatory Medicine. The goals of Participatory Medicine are for patients to take a greater role in their health care by learning more about their disease, but also convincing doctors to embrace the concept that “knowledge is power” and that having informed patients makes health care better for all. The doctor-patient relationship becomes a more equal partnership. As Dave puts it, e-Patients are empowered, engaged, equipped and enabled.
At Celebrity Diagnosis, and our companion site Resounding Health.com, we see our mission as one of patient advocacy, providing consumers with different ways to increase their health awareness and medical knowledge so that they can become equipped and enabled to managed their health and work effectively with their health care professionals when they do get sick. Celebrity Diagnosis uses the spotlight of celebrity to inform; Resounding Health provides the tools to store, organize, update and share the results of their research with their family, friends, other people with similar conditions and their health care providers.
A video of this morning’s Grand Rounds presentation by Dave and Danny Sands will be available shortly. We’ll post the link as soon as we have it…..Here it is.