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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...

Hey lurkers – hi! Step right up, speak up here!

For a couple of years I’ve been wondering when controversy and snark would hit this movement. Looks like it showed up this morning. Today one of our members posted on our members-only email group: I was on a phone call recently with some colleagues in health IT...

SUITS and VOMIT: fun at the ABIM Foundation Forum

As noted a few days ago, I’ve been at the ABIM Foundation Forum. This is, frankly, the most heartening event I’ve been to: the Foundation people are working hard to generate real transformation in the practice of medicine, including the new Choosing Wisely...

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...

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