I was glad when it started raining today – it’s proper to rain when you cry.
The Digital Patients’ Bill of Rights
Things are happening fast. The E-Patient Connections conference was fantastic. The day before, I participated in the Digital Patients’ Bill of Rights meeting. I haven’t written about it yet, but you can read about it on Tiffany’s Lupus blog, Making Progress: The Digital Patient Bill of Rights. That was the first step in a critical process of developing a vital document for patients.
Today, Think Brownstone posted a blog about the E-Patient Connections conference which discussed my part in it. It’s good the reach is spreading beyond the ballroom! I’ve been waiting for the video to be produced, but you can still watch my talk on the original E-patient Connections Ustream (begin at minute 26).
Do not miss!
Also new today, my interview with Pharmaphorum, a part of their patient perspective project, makes a great reason to check out their site, if you haven’t done so yet.
A huge step for the RPF
E-Patient Connections was the first of three important trips this fall. Katie Beth and I are headed to the Mayo Clinic in Minnesota for a Social Media Summit in October. It has so much more potential than it sounds like. It’s much more than how to Tweet! In an upcoming post, I’ll share a portion of my contribution to the materials.
After that, is the ACR Scientific Meeting in Chicago in early November. I’ll be reporting on whatever earth shattering scientific breakthroughs there are, as press. But the Rheumatoid Patient Foundation will also be exhibiting for the first time.
Why cry?
Several reasons… but I guess the bottom line is that we need help. People keep asking when they can eventually help, but they don’t realize that we need it now. I’m obviously not good at marketing. It’s so important to me that no one “use” our community, that I haven’t even done much myself to mobilize it.
So, I sit here knowing we have the resources we need in our midst, but not knowing what to say. If everyone gave a few dollars, there would be more than enough.
When funding fell through for a project, I hoped we’d have enough to do it anyway. Then, the estimate came back much higher than expected. I’m not giving up but I spent the last 24 hours trying to figure out how to make this work. I’ve looked at our options. And I’ve decided to let you know about the need and see what happens.
We will need two things.
- Soon, we’ll need folks to carefully follow instructions to submit some short video clips. If you want to participate, please watch for instructions coming soon.
- Second, we need money to professionally produce the final product, a video to be presented at our exhibit at ACR. Anyone can donate to the cause using the RPF donate page.
Yes, you can donate even if you don’t have RA. Yes, the RPF is a 501(c)3 non-profit.
Humble donate button
There was a donate link on the RPF site but, my daughter who designed it is as subtle as I am, so it’s practically invisible. I don’t think anyone noticed it. Tonight I’m asking her to replace it with something tackier and more obvious.
Gaining strength and courage
Recently, someone wrote to me: “Hang in there. I take courage in your strength.” I won’t share the rest, but think about how we gain strength from each other.
It was like the time I took my webcam and turned it at the laptop. I laughed at lots of tiny webcam-laptop images on the screen. Our force is also reflected back on itself.
I’d rather privately raise the money, do the work, and then just present the video publicly. It’s hard for me to make the step toward learning to mobilize and publicize and organize. But it’s time. Just like taking that first dose of methotrexate.
Postblog: You may notice a recent post is missing. I took it down by the order of a certain magazine. I was not previously informed of any embargo, but in a spirit of cooperation, I complied.
More! Here’s a great video by Health Central showing the Patient Bill of Rights meeting. I’m in the corner so I don’t think you can see me, but it’s my voice at the end saying “We’re all patients…”
Several patients are featured in the video Finding Support in an E-patient World by Mark King.
Recommended reading
- ACR REF Rheum Research & Courage That Won’t Back Down
- Video: Thoughts from American College of Rheumatology (ACR) 2010
- American College of Rheumatology Annual Meeting 2010
