Posted by: menotmd | July 11, 2009

I am the captain of my fate…

So on July 6, 2009, a revolutionary was redefined – or rather the definition expanded for me. In my brief time here on earth, I’ve come to view revolutionaries as fatigue-wearin’, che-ism spewing who tend to leave nevah-nevah land when they grow up. I ran late and (putting away the order can be a tiring job – I overslept and shout out to my boy, Bj for being dedicated and siked to see this event because he work me up) felt like Tony and Maria in the West Side Story and almost belted out a rendition of “Something’s Coming” on the E line to counteract the anxiety of having just woken up and being late.
As I sat down, a very tall Epatientdave and Dr. Sands (yes, the one who outlined the guidelines for electronic communication between patients and doctors) immediately called me out (for being late – hey, I deserved it) and asked me to tell them something I was hoping to learn from this discussion (and it was a discussion). This was called “Agenda-Setting” – a guideline that allows the patients to communicate to the doctors what questions they are hoping to have answered during the patient visit, since doctors can’t read minds.
For all y’all who don’t know, Epatientdave was a stage 4, renal cancer survivor. I use WAS intentionally, because this man used his experiences to empower himself and is now thriving. He is currently a face of participatory medicine.
Dr. Sands asked a very obvious, yet obscure (as in folks don’t ask this question enough) question: Why aren’t patients seen as “customers” in the health care industry? A couple of my classmates answered: “because there’s more than enough of us” and “because we – patients- don’t pay the doctors/providers directly; we pay the health insurance.” He also went on to dispel the myths of doctors opening the “flood gates” of emailing their patients. Dr. Sands stated that patients are generally considerate as to not overwhelm doctors with constant missives and doctors generally develop boundaries efficiently and effectively when a patient abuses the electronic communication. Furthermore, he stated that on average a 100 patients generate 1 email and 1500 patients = 15 emails so that cm3 of emails are not as big (through Patientsite at Beth Isreal Deaconess Medical Center) . Frankly, based on my experience with my doctor — doctors won’t engage in electronic communication unless they are getting paid for it. But truth be told, I don’t like my doctor much – she rushed me out of my visit because she had to feed her child (while I don’t like to feel rushed , I understand) but the real reason is because I approached her with some information that I had found on the net about a medication she had prescribed to me and was dismissive of the information, nor did not wish to engage in a conversation about it.
While Dr. Sands provided some much needed “oh i knew it! I knew we ain’t crazy!” (we = us, patients) knowledge; it was Epatientdave that drove it in for me. He stated that patients must learn to play role in the health. We have to embrace knowledge symmetry and not shy away from being an expert in what goes on in our own bodies. We have to go online and find good peer connections and learn to filter the good information from garbage.
I would write more, but this entry is long enough. If you want to know more, one of my entries has a link to epatientdave’s blog. You can also go on www.participatorymedicine.org and e-patients.net to find out more.

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Responses

  1. So, yeah, you clearly got it. Good work, good post!

    My man Dr. Dan is a great example of the participatory doc. He absolutely knows his stuff, but that includes knowing what he DOESN’T know, and not being afraid to say it.

    Mind you, he’s not some TV wuss doc with no chops. I clearly remember him communicating to me what I needed to hear, when the news was not good. I was petrified when I first got that diagnosis, and he was there for me. Strong man – yet a peer, an equal.

    Yup, you’re the captain of your fate. Go spread the word.

    • No doubt about Dr. Danny Sands – the mere fact that homeboy ain’t scared to say to a patient – “I don’t know” or “let me research that and get back to you” – proves that when you work as a team, miracles do happen. I’m telling you, y’all like the Wonder Twins (remember them?) Wonder Twins! Activate! In form of LIFE-SAVING ADVOCATES!

  2. Hahahaha….perfect.

  3. Heyyyyyy, there was an image in that comment – it was supposed to work! Here’s the URL:

    Or maybe this will work better.


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