Last Friday, I had the opportunity to attend the first-of-its kind e-Patient Bootcamp program held at the offices of Edelman PR in New York City. The event was hosted by the venerable leader of the e-Patient movement, Dave deBronkart. e-Patient Dave, as he’s more commonly known, has an incredibly moving story: after being diagnosed with “terminal” metastasized kidney cancer, he managed to beat the odds by using the internet and his own stubborn persistence to stay alive. e-Patient Dave’s story demonstrates the power an educated patient can have on his own health.
Dave’s premiere bootcamp event was attended by about 15 people from around the health community, from fellow e-Patients to folks from Health 2.0 start-up companies and Pharma — all there to learn why it’s important to be an e-Patient, and share best practices and meaningful case studies, like those of activist widow and artist Regina Holliday and empowered cardiac patient and designer Hugo Campos.
The day-long seminar was chock-full of eye-opening insights. Here are a few nuggets I picked up:
- “Don’t be a jerk to your partner.” It’s important to be your own advocate, but work with your doctor. The e-Patient movement is not anti-doctor. It’s about everyone working together. Physicians are coaches; patients are players. Participatory medicine brings shared responsibility.
- Sharing information with patients can open up resources available to patients. Access to patient records allows patients to share information with family and friends, who may have much-needed experience. Becoming more informed and less “clueless” can help quickly identify opportunities and mistakes. Patients are a “second set of eyes,” pointing out incomplete or inaccurate records.
- There is a push for medical records to be based on insurance records. Which is bad, Dave says, because insurance records often have numerous mistakes based on the doctor’s shorthand. Dave pointed out loads of errors on his own insurance records, like notes on conditions he never actually had, but which the insurance company inferred based on his patient records. Yikes!
If you’re interested in reading up on more e-Patient lessons, check out the sources from Dave’s presentation which can be found on his blog.
I also had the opportunity to chat with Dave one-on-one about why he thinks the e-Patient movement is so important, how more patients can get involved, and what we might see changing in 2012:
If you’re curious to know more about Hugo Campos, whom Dave mentioned in the interview, you can check out a talk Hugo gave at TedxCambridge here.
I also spoke to several of the attendees of the bootcamp, to find out why they came and what lessons they were taking home:
To echo Tiffany’s closing sentiments there, I truly believe that blogging, along with all these new channels for patient community building (social networks, Twitter, Facebook, etc.) really can change the world. And we should never underestimate the power that we have over our own health!