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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...

Caregivers Online

A new Pew Internet/California HealthCare Foundation report is out today: Family Caregivers Online. I thought I’d give some background on why we did the study and a few key take-aways. Caregivers are alpha geeks of health care 30% of U.S. adults are currently...

CureTogether acquired by 23andme

Big news today in the health geek world: CureTogether has been acquired by 23andme. For those just tuning in, CureTogether enables people to track and share their personal wellness experiments so that others can benefit from what they learn. 23andme enables anyone who...

Bowling Alone, Healing Together

One year ago, I read a JAMA commentary that was so good I had to stand up while I was reading it: Are Patients Knights, Knaves, or Pawns? I blogged about it here (touching off a heated discussion) and started an email correspondence with one of the authors, Sachin...

Watson: a love story

Before you read this post, think of a time when you had a crush on someone. Think about that swirl of emotions, the highs and the lows. That’s where I was a couple weeks ago, except it wasn’t about a person. I fell hard for Watson, IBM’s hot new outboard brain. I’d...

Unpacking self-tracking

I tweeted a stat this week which garnered some sharp critiques:   1 in 4 U.S. internet users track their own health data online – @pewinternet pewrsr.ch/khtiMB #healthdata — SusannahFox (@SusannahFox) June 5, 2012 Please help me improve how Pew Internet...

A “de-marketing strategy”

J.R. Schmitt tipped me off to a fascinating article published in 1997 (!) about a “de-marketing strategy” for the use of general anesthesia in dentistry in the UK: De-marketing: Putting Kotler and Levy’s Ideas into Practice, by Steven Lawther, Gerard...

Mama birds: Catherine Fairchild Calhoun and Laurie Strongin

On February 29, 2012, Rare Disease Day, I hosted a conversation with Catherine Fairchild Calhoun and Laurie Strongin, two people who have inspired me in my research about the social impact of the internet on health. They have also inspired me personally, finding joy...

The impact of the internet on one man’s life

Nell Minow is a movie critic and corporate governance watchdog (yep, both). She and I were seated together at a luncheon a few weeks ago, part of a weekend-long meeting on leadership. We had just watched the movie, Act of Valor, and began talking about different kinds...

What’s the future for self-tracking?

Stephen Wolfram’s essay, The Personal Analytics of My Life, begins: “One day I’m sure everyone will routinely collect all sorts of data about themselves.” A Pew Internet survey suggests we have a long way to go: a September 2010 survey found that 27% of internet users...

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