I Danced at My Daughter’s Wedding

DP - Case Study

Dave deBronkart Discusses How E-Patient Saved His Life

 

Dave deBronkart survived stage IV cancer with the help of information he found on an online network for cancer patients. Now he blogs as “e-Patient Dave,” writing about how patients can use information including EHRs to participate in their own health care. Here is his story.

I got interested in health care the hard way. I went to my doctor with a sore shoulder and got an x-ray. And on Jan. 3, 2007, the phone rang and it was my doctor. He said, “Dave, your shoulder’s going to be fine, but there’s something in your lung.” It turned out to be stage IV kidney cancer.

I’ve been online since 1989, so I went home and started searching for quality information. I went to some respected medical websites. I read that the median survival time for my condition was 24 weeks. This was bad. I was facing the grave. I had to sit down with my daughter and her boyfriend and say, “I don’t want you to get married prematurely, just so you can do it while I’m still alive. But this is really serious.”

Online Research Uncovers a Cure

My doctor prescribed a patient community, www.acor.org External Links Disclaimer, which is a network of cancer patients. Very quickly, these other patients told me I should go to a specialist center. They told me about a treatment that occasionally works, called high-dosage interleukin-2. And someone emailed me a list of four doctors in my part of the country who offer this treatment, along with their phone numbers. How amazing is that? The interesting thing is, it’s several years later now, but you still can’t find a website that gives a patient that same information. It turns out that patients know what other patients want to know. That’s the power of patient networks.

I got two rounds of interleukin-2 two months apart, and the tumors started to shrink. A year and a half later, I was there when a magnificent young woman, my daughter, got married. There was a moment, right before the ceremony started, when it was just the two of us standing together. And at that moment, I was so glad that she didn’t have to say to her mother, “I wish Dad could have been here.” That moment…

Read the entire case study at Health IT.gov

 Questions

1.  Dave said, “Patients are the most underutilized resource in all of health care”.  In what ways can patients more fully utilize healthcare resources available to them?

2.  List some resources you would use, if you were in Dave’s situation.

3.  Dave mentioned that you can get access to information nationwide about cars, but not your healthcare.  Comment on that observation.

4.  What can HIT professionals do in order to assist with nationwide HIE development?

5.  How could PHRs make a difference in the quality of healthcare?