Thursday, October 27, 2011

Tweet-Chat tonight, 8pm EDT, on patient-initiated research, advocacy & more

My first-ever tweet-chat will be tonight at 8pm EDT. Tweeting with me will be my fellow SCAD patient, Mayo co-presenter and friend, Katherine Leon.

Stop by, and ask questions! We're going to be focusing on patient-initiated research, what it means to be an e-patient and a patient advocate, and more.

Details here.

Also, if you're not already following me on Twitter, I'm @LauraGHC.

Sunday, October 23, 2011

HHS wants US--patients!--to participate in grant reviews

That's right, patients, everyday, ordinary patients like us--are being asked to join in reviewing grants next year.

e-Patient Dave has a great, non-technical breakdown of the easy application process.

Longtime readers of my blog know that one of my passions is encouraging more women to participate in heart-related research.

This is a step better; it's a chance for patients to actually shape the direction of new research.

We're being invited to the table. The chair's been pulled out for us. Will we sit down and make our voices heard?

Friday, October 21, 2011

Mayo Social Media Summit & Residency

Last day of Mayo's first-ever Social Media Residency.

I'll have to compose my thoughts in a more organized way later; it's been a wonderful experience full of meeting fantastic people with inspiring ideas, on uniting patients, opening communication with healthcare providers, using social media to best advantage, and more.

Meanwhile, here's a quick picture from Tuesday's "Power of the e-Patient" panel. From left to right, seated in the yellowish chairs: Dr. Sharonne Hayes, Dr. Marysia Tweet, Traci Klein, me, Katherine Leon (my fellow SCAD patient), and moderator Chris Gade:

So many people came up to us afterward to say how much they enjoyed the panel, how enlightening it was to hear the patient perspective. I have actually found it a little surprising that people are treating the hearing of patient voices as a new, shiny thing. Have healthcare providers really and truly not been paying attention to us, their customers?

More on that later. Right now I'm in the middle of the blogging panel at the Social Media Residency, on Blogger vs. Wordpress...

Monday, October 17, 2011

SCAD comes to has picked up the SCAD story and is covering it:

I left Trisha a comment, hopefully clarifying a couple of points--but it's great that a big site like About is also covering the story.

Thursday, October 13, 2011

SCAD Ladies Stand Up: Stories of Patient Empowerment

My partner in crime, the other half of our "Dissection Duo," aka my friend Katherine--she and I, and Dr. Hayes (the courageous cardiologist who agreed to take us on as a group and study us--at 100% Katherine's instigation), and several other SCAD survivors tell our stories here:

The SCAD Ladies Stand Up: Stories of Patient Empowerment (note: it's a PDF).

Thanks to John at Inspire, and the whole team, who worked to put this piece together and publish it.

Saturday, October 8, 2011

"Disease-mongering"? LOLWUT?

A blogger on the site thinks that Go Red for Women's recent video, starring a 37-year-old Elizabeth Banks, is just "disease-mongering," and is a thinly-veiled attempt to get young women to go shop at Macy's since Macy's is one of the sponsors of the video. This ill-informed... person... also accuses the AHA of trying to cash in on some of the "pink money" that flows so thick and fast to breast cancer research.

Ring-ring, clue phone for you: heart disease kills SIX TIMES AS MANY WOMEN AS BREAST CANCER.

Also, the age group that has shown one of the biggest recent increases in rates of developing heart disease? 35-45 year old women.

Around 80% of heart disease is preventable, especially if you start early., you screwed up. You need to post some actual facts, an apology, and a retraction from this author.

Wednesday, October 5, 2011

Mayo Clinic's Social Media Summit

In just under two weeks, I will be at Mayo's third annual Social Media Summit. My SCAD-sister Katherine and I, plus the authors of Mayo's pilot study on spontaneous dissections, will be on a panel together.

I'm slightly nervous but also looking forward to it. I hope it brings more attention to the two new SCAD studies that Mayo is doing, and that we garner more participants in the research.