Thursday, December 03, 2009

A grand show by Dave and Danny

Medical grand rounds at BIDMC today consisted of a presentation by Dave deBronkart (aka e-Patient Dave) and his primary care doctor, Danny Sands (seen here with Chief of Medicine Mark Zeidel.)

Back in January 2007, Dave went in for a routine radiology study. As he noted a few days later on his CaringBridge site:

On January 2, 2007 a routine shoulder x-ray showed a mass in a nearby part of my lung. Four weeks later, it appears to be kidney cancer that’s spread to both lungs. This site will chronicle the learning and emotional processes we’re going through as we learn and do everything we can to maximize my chances. Top of the list: a strong mental attitude and a clear mind!

It was actually stage 4 renal cancer, spread to multiple sites in his body. Thus began an intense learning adventure for both Dave and Danny. Dave first learned that his expected lifespan was measured in weeks, given the stage of his disease. He then helped guide his own treatment by connecting with many resources to learn about his disease and therapeutic approaches to it. Danny, who was already pretty astute about such things, learned more deeply than he could have imagined that the kind of deep patient involvement exemplified by Dave can change the course of a relationship with a physician, and the course of a disease.

Dave successfully received treatment of Interleukin-2 at BIDMC and his tumors shrunk. He decided to spend his new life telling the lessons he learned about patient involvement. Here's a summary from Health Leaders Media.

The Partnership of Physician and Patient
When Dave deBronkart was diagnosed with stage four kidney cancer in January 2007, he turned to the Internet. "I've always been an online guy, so of course I Googled my butt off," he says. What he found: "Outlook is grim. Prognosis is bleak." But then his doctor told him about an online chat room for kidney cancer patients on the cancer-support site Acor.org, where the patient community provided vital validation about Interleukin, a treatment he already had researched. The potentially toxic cancer treatment is decidedly not for everyone. But deBronkart's doctor said he was qualified for the treatment and he followed his doctor's advice, which he says shrunk his tumors—and saved his life.

Since then, he's become an online advocate for patient engagement and empowerment, and is known to many as e-Patient Dave.

The "e" in e-patient represents a number of descriptors: equipped, enabled, empowered, engaged.

Effective e-patients are involved in their own health in a number of ways, deBronkart says:

  • They look at their medical records online
  • They may share medical records with family and friends who know medicine
  • They use e-mail to correspond with their doctors
  • They are active partners with the various physicians involved in their care
  • They're often active in patient communities
  • They may become active researchers

deBronkart works late into the night—long after knocking off work at his day job as a software marketer—spreading his patient empowerment message in chat rooms, on blogs, via Twitter, and in other forums. "My message has simplified. I just believe that patients have every right to know what their options are and they have a fundamental right to pursue those options," he says. "My point here is not that doctors can't do the job—it's that patients can help. We actually have the ability to contribute and help in this economically difficult industry.

Danny and Dave are now both active in the Society for Participatory Medicine, spreading the word and publishing research in support of "a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care."

After grand rounds, I ran into the two in the hallway and reminded Dave of my response when he told me about his disease in January of 2007 and explained that it was likely that he only had several weeks to live. We are both officers in our MIT class, and we were planning our 35th reunion. I said, "Dave, that doesn't work. You need to attend our reunion in June."

Well, Dave not only attended that reunion -- to the enthusiastic welcome of his classmates -- but we are starting to look forward to attending the 40th together.

8 comments:

Anonymous said...

I wonder if a transcript of that grand rounds is available? I think I know what Dave probably said due to reading his own blog, but his physician's words need to be disseminated to docs everywhere, many of whom are uncomfortable with this behavior by their patients.

nonlocal

Paul Levy said...

I'm trying to get the video. You are absolutely right. Danny's comments were spot on and very important.

Pam Ressler said...

Congratulations, Paul on highlighting participatory medicine. This can and should be our philosophy in delivering high quality healthcare. Whether or not our patients are as internet savvy as e-patient Dave, we can encourage and support them in being equipped, enabled, empowered and engaged in their health and treatment choices. We know from various studies that patients who feel a sense of control, committment and challenge in their situation have better outcomes...this is good medicine!

Sheila said...

Congratulations to Dave and Danny. Continued good health Dave. You are an inspiration to others who can use not only your help but your caring. May G-d continue to Bless you with good health.

Bill Reenstra said...

Paul as part of a participatory medicine program can BIDMC put all grand rounds presentation on your hospital's web site?

Paul Levy said...

Bill, we cannot because there is often confidential patient information in the discussion.

There are some equivalent stories, though, that we print up in JAMA, called "Clinical Crossroads."

kosherfrog said...

Now that BIDMC has crossed the Rubicon with this Grand Rounds presented by an expert patient and his participatory doc, when will you start teaching all the new medical students about the many great advantages of the practice of participatory medicine?

Paul Levy said...

I know this isn't the first time there has been a joint appearance; but you raise a good point. We don't see all the new medical students. We only get to see a third of the HMS medical students, but we have been trying to introduce more of this kind of topic into their time here.