Black Lives Matter Plaza, Washington, DC, June 9, 2020, by Ted Eytan on Flickr

Sonja Sharp, an LA Times reporter, interviewed Deaf people about how they are creating and sharing new signs for this moment of reckoning and recognition. Watch the story’s video (below) featuring Rorri Burton, a Black American Sign Language (ASL) interpreter:

The sign for “your knee on my neck” is a vivid reminder of Deaf gain, the advantage that people who use a visual language have when expressing ideas. How might we all learn from these powerful communicators? Benjamin Bahan delivered a keynote about this at Stanford Medicine X in 2015:

Another gain for the world: When creative people…

Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You would do the same thing for your child.”

She’s right. I would certainly try. But would I be as successful as she was at navigating the health care maze and finding answers? I hope to never have to find out.

I thought about that…

Source: brad on Flickr

by Susannah Fox, Jane Sarasohn-Kahn, and Lisa Suennen

I’ve lived long enough to have learned
The closer you get to the fire the more you get burned
But that won’t happen to us
Cause it’s always been a matter of trust

  • A Matter of Trust, by Billy Joel

If you’re in health care and don’t live under a rock, you have probably heard that United Health Group (UHG) has acquired PatientsLikeMe (PLM). After the announcement, there was a lot of sound and fury, some of which signified nothing, as the saying goes, and some which signified a lot.

Three good friends — Susannah Fox, Jane Sarasohn-Kahn and Lisa…

The Cajun Navy — people who rally their personal boats to rescue hurricane survivors — is an example of how ordinary citizens are the true first responders in a disaster zone. Instead of seeing locals as liabilities, the Federal Emergency Management Agency has started looking for ways to support their work.

As David Graham wrote in The Atlantic:

“When you step back and look at most disasters, you talk about first responders-lights and sirens-that’s bullshit,” Craig Fugate, who headed FEMA during the Obama presidency, told me in 2015. …

Image by Matteo Papagna on Flickr

There has been a steady drip-drip-drip of articles documenting how health apps are sharing data with third parties:

  1. Data sharing practices of medicines related apps and the mobile ecosystem: traffic, content, and network analysis, by Grundy et al. (British Medical Journal, Feb. 25, 2019)
  2. You Give Apps Sensitive Personal Information. Then They Tell Facebook. Wall Street Journal testing reveals how the social-media giant collects a wide range of private data from developers; ‘This is a big mess’, by Sam Schechner and Mark Secada (Wall Street Journal, Feb. 22, 2019)
  3. Is your pregnancy app sharing your intimate data with your boss…

“Sorting” by mkreul on Flickr

How do you define “health data”? To borrow a phrase from Daniel Solove, it is a concept in disarray and in need of a taxonomy.

Here are the items that fall naturally into the health data basket:

  • electronic health record data
  • current or past health and disability status, including mental and physical well-being
  • medication lists
  • genetic data, either collected by direct-to-consumer (DTC) testing or in a clinical setting
  • data generated by devices, either medical (such as pacemakers and blood pressure monitors) or consumer (such as fitness trackers and home safety devices)

But how about:

  • data generated by loyalty cards (supermarket…

“Go tell it on the mountain” — a jacket for Marianne Vennitti by Regina Holliday

What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — you find or create online communities where people can share their health experiences.

I’ve written about how peer health advice has helped people prepare for brain surgery, deal with a one-in-a-million diagnosis, and manage tiny pills despite hand tremor. But how can peers help…

Regina Holliday’s 73cents mural in Washington, DC. Photo credit: Ted Eytan

I have found that we can anticipate the future by paying attention to artists. Like hackers, artists bend tools until they break and ask, “Why CAN’T I do that?” They push the edges of any field they find themselves in.

Autodesk, which makes software for people who make things, created the Pier 9 Residency Program to give artists, creatives, and manufacturers the chance to work with the latest digital fabrication tools, right alongside the developers. For example, Jennifer Berry, a Pier 9 artist in residence, was inspired by bees — the world’s first 3D printers. …

Blue Button is a Trojan horse for culture change in the American health care system. It places power in the hands of patients and whets the data appetites of millions of Americans and the companies who would like to serve them.

If you’ve never heard of Blue Button, here’s a quick overview:

Photo by Meghan Fox

Six years ago, the last time I had the opportunity to measure it, a Pew Research survey found that about two in ten U.S. adults have gone online to find people who might have health concerns similar to theirs.

Now, in a report we published on July 31, a Hopelab/Well Being Trust survey of 14- to 22-year-olds finds that FOUR in ten (39%) young people say they have gone online to try to find people with health conditions similar to their own. And they have been wildly successful: 84% say they were able to find a health peer online.

This translates to one in three young people in the U.S. who found health peers online and, of those, 91% say their last experience with an online peer was helpful: 20% say it was “very” helpful and 71% say “somewhat.”

Susannah Fox

I help people navigate health and technology.

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