Last night I was chatting with someone after class at Stanford (excuse me while I pick that name up off the floor) about my perception of the FDA and realized we’ve come a long way. In particular, I recalled seeing Bennett Dunlap literally sitting at the table with the FDA, talking about the accuracy of our blood glucose meters. I can’t speak for other disease communities, but seeing one of “us” there with one of “them” is something I never would have anticipated five years ago.
An organization like the FDA has to move slow. The health of the country is in their hands. When it comes to reviews, recalls, reports, and other ‘r’ words, they have to take their time to ensure they’ve done their due diligence to get things right. That approach is what makes the conversation Bennett had all the more important. An entity as massive as the FDA doesn’t pivot in an instant. They don’t turn on a dime. Change is a slow, gradual process over there. That’s why it’s important for us to applaud, encourage, and continue to support efforts that recognize and include patient communities in their processes.
Every time they look to “us”, the patient community, we have to be ready to support the mere fact that they are including us in the conversation. Feedback on open dockets, like blood glucose meter accuracy offer an excellent opportunity to say “thank you for giving us an opportunity to share what we think, let’s do this again, as often as possible.”, or something like that.
My point is, when the FDA looks to the patient community for feedback, we have to speak up. We have to speak up not only for ourselves, our loved ones, and each other – we have to speak up for other disease communities who deserve a chance to be part of the discussion. We have to speak up to reinforce that this type of action is most welcome, and should be pursued as often as possible.
To that end, here’s your next opportunity to speak up. You can go to diatribe.org/survey and help inform the FDA on what matters most to you. Continue reading
Since I’ve started sharing my journey to acquire, complete training on, and ultimately manage my diabetes with an insulin pump, I’ve been receiving all kinds of feedback across various social mediums. Thank you for that. One interesting comment that keeps popping up is a sense of surprise at my patience through all of the hoops and hurdles I’ve encountered along the way. A number of people have added that they didn’t have to wait nearly as long as I am to start pumping insulin, be it immediate training, or skipping training altogether. If possible, I’d like to take an informal poll here, to round out this particular branch in this discussion.
If you’ve ever worn, or are currently wearing an insulin pump: When did you start wearing your first insulin pump? How long did you (have to) wait after you received your first insulin pump before you started on insulin? Did you meet with a CDE before hand? Did you jump in without formal training? What additional resources, if any, did you consult in your first weeks?
In light of some of the conversation happening on and around My Diabetes Secret, Cherise decided to use the platform she built to address some of the topics presented without giving an opportunity for the negativity to invade the weekly tweetchat.
One afternoon a car pulled up next to me and the driver rolled down his window gesturing to get my attention. He was holding up a small electronic device that turned out to be a Medtronic insulin pump. He wanted to say hello after seeing my license plate.
I had a lot of thoughts about this comment. I asked Twitter for feedback and got some good responses there. I also shared this on Facebook and got some good feedback there as well. I felt like writing more, but then Dayle and Kerri said all I wanted to say. So you should just read what they wrote.
Finally, I would urge anyone blogging for recognition to consider if a blog is really the right outlet for their goals/needs. Blogging is a form of sharing what it is you want to say. It’s not necessarily a platform for making people pay attention. That’s their choice. If your words or your way of changing the world resonates with other people and is valuable to them, they will listen. And that’s what it should be about – not conferences or freebies.
Defining the DOC: Why Do We Blog? – Imperfect Pancreas
I started this site because I wanted to find some kindred spirits. And that’s the reason I continue to write, and to try and connect. It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier. Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.
You Are HERE. – Six Until Me
The Storification of tweets continues as I recap Day 2 of Stanford Medicine X. After the rush of hosting the opening panel the day before, I figured the rest of the weekend would be a walk in the park. Here are some of the stand-out moments from the day, as told by my ability to be clever in the span of 140 characters.
(And you should too)
We still have a ways to go before being the “token patient” at a conference is a thing of the past.
That, right there, is my most important tweet of the day. Maybe even the entire conference.
I attended Stanford Medicine X this weekend, a conference billed as the intersection of medicine and emerging technologies. Because the conference took up so much of my time, I didn’t have an opportunity to record a traditional podcast. Instead, I asked ePatient scholars to leave a brief comment on their experience. With a little editing magic, here you go. Enjoy!
For more information about Medicine X, visit medicinex.stanford.edu.
Special thanks to everyone who called in:
On a notecard briefly answer one of these questions: what uses up your energy (spoons) the most; how do you most like to expend your energy (spoons)?
If you’re not familiar with the Spoon Theory, I encourage you to read this post from butyoudontlooksick.com. It’s well worth the read. But for the sake of this post, I’ll briefly summarize this whole spoon business.
Essentially, spoons are an arbitrary measurement of energy. “Healthy” people have unlimited spoons to use during the day, but people dealing with chronic pain have a limited number of spoons. As a result, seemingly ordinary tasks like taking a shower or going to the grocery store are weighed against the amount of energy, or spoons, required. Some days you have more spoons at the ready, and can get more done. Other days, you barely have enough spoons to get out of bed. If you ever see #spoonie included on a tweet, now you know what’s going on.
In the grand scheme of things, the Spoon Theory can apply to anyone, to any patient as a way to convey the struggles that come with getting by day to day. With that understanding comes the collaboration at Medicine X. Attendees decorated spoons in the image of the thing that drains their spoons on a daily basis. What consumes you as a patient advocate? What keeps you up at night as a patient? What worries you the most as a caregiver? If you’re honest with yourself, these are incredibly intense questions that can cost a number of spoons to just contemplate.
My spoon was decorated in the spirit of My Diabetes Secret.