Engage with Grace

Engage with Grace

A guest post from the Engage with Grace team… One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you’ll most certainly be right.’ We love it for three reasons: It reminds all of us that living...

Rural e-patients face access challenges

David Gorn, a reporter for California Healthline, contacted me after the release of the Pew Internet/California HealthCare Foundation’s Mobile Health 2012 report and asked if there were interesting findings on rural Americans. Indeed there are and I wish...

Sincerity in the storm (welcome to our world)

Hurricane Sandy “slapped the snark out of Twitter” for media reporter David Carr. In his column today, Carr discusses a newfound sense of community, which will sound familiar to anyone who uses social media to navigate an acute or chronic health condition:...

Fact checking at Medicine X

(A cross-post from susannahfox.com) I had the great honor of being part of the first Medicine X conference at Stanford University last weekend. I presented a sneak preview of new survey results collected by the Pew Internet Project and the California HealthCare...

Medicine 2.0 Day One

My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway...

What’s in a (disease) name?

I witnessed an intriguing Twitter conversation between Christy Collins and Greg Biggers about disease names, so I asked Christy to write up her thoughts. It is an honor to host this guest post: By Christy Collins When I started an advocacy and research organization...

The internet’s downsides: tell us your stories

This is a request for help finding people who have had bad experiences with online health resources. Let me first say that the internet is often a positive force in people’s lives. My own organization’s research can paint a rather rosy picture: teens are...

XX in Health: Women Leading Healthcare

Here’s a video that had me at hello — it leads with data, then follows with insights from people I admire: If you’re intrigued, look for other posts about women in healthcare on Twitter by searching for the hashtag #xxinhealth. And for more wisdom...

Health Care Hackers

A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers. This was no academic exercise. It was as if...

Facial Paralysis, Not Personality Paralysis

Anyone who has doubts about including patients’ input in research studies should talk with Kathleen Bogart, PhD. She focuses on the social ramifications of facial paralysis, both congenital (like Moebius Syndrome) and acquired (like the often partial facial paralysis...
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