What I’ve been working on

It’s been a busy few weeks and I’d love to share a few items in one post:

  • I served as the emcee at the Robert Wood Johnson Foundation‘s Data for Health report release event. I attempted to capture the spirit of the event in this Storify.
  • Here’s a post I wrote about the Data for Health initiative: Imagining the Future of Health Data. It includes my favorite quote from the listening sessions: “The complexities of people’s lives don’t always fit well in a drop down box.”
  • Erin Moore and I published our second essay in the Cystic Fibrosis for One Day series. To catch you up, here’s the first installment and a Storify about this empathy exercise organized by Smart Patients.
  • Chris Snider interviewed me for his Just Talking podcast and, as usual, got me to tell a few secrets and reveal more than I meant to (if that doesn’t make you click I don’t know what will).
  • One topic that Chris and I discussed: the opportunity to reach a broader audience by publishing on Medium. I even enjoy the pushback, such as the cheeky “who cares?” response I got to one of my essays. It inspired me to write “Welcome.”

And that’s where I’ll close this quick update. Please let me know if any of the above inspires questions — the conversation is never over in the comments!

Cystic Fibrosis For One Day

Boy wearing nebulizer mask and his momI shadowed a mom and her 5-year-old with CF from afar for 24 hours.

It taught me more than I could have imagined about living with a life-shortening disease — and about myself.

This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other. Continue reading

What health care can learn from Mike Mulligan and his steam shovel

Google is upgrading health search…again.

In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.

Cover of children's book: Mike Mulligan and his Steam Shovel, by Virginia Lee Burton

Continue reading

Weekend update

Last Saturday I posted a round-up of what caught my eye during the week and my friend Andre Blackman (@mindofandre) created this awesome graphic:

Susannah Fox's Weekend Update - credit: Andre BlackmanThus encouraged, here’s another round of what I favorited on Twitter this week:

Nancy Stein (@SeniorityMatter) shared an opinion piece by Rob Lowe about long-term care planning. He’s promoting his partnership with a financial services company, but it’s a good article. I wonder what effect a celebrity can have on this topic. For some, the financial frame might be a good hook. For others, an appeal to intergenerational responsibility might focus the mind: “Take care of Mom the way she took care of you.” We sure need something to break through the denial wall. Continue reading

What I’m reading, listening to, admiring…

Susannah at the library

I hunkered down at the library this week, working on a couple of long-term projects.

I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week:

Radiolab: Worth — what would you pay for another month of life? How about a year? They get into the debate about Solvadi, which I find fascinating, and wind up talking to patients, “the people who aren’t at medical conferences.” Thanks to Mike Evans, MD, for tweeting the link.

Pew Internet: Social Media Site Usage 2014 — 81% of U.S. adults use the internet and, of those, 71% use Facebook, which is really pretty astounding (and is an opportunity for health intervention and support). Continue reading

Save us, Facebook

Facebook logoThe Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way.

Facebook should support those communities, listen to their users, and create a safe space for health on their site.

Two examples of Facebook’s direct effect on people’s well-being:

Erin and DrewErin Moore is the mother of four children, one of whom is living with cystic fibrosis (CF). She is a member of a Facebook group called CF Mamas, a thousand parents who talk online about everything from recipes to research updates. Continue reading

How did we get here? And where are we going?

Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish):

It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future.

The Vasa, which sank on its maiden voyage in 1628I opened with an example that was inspired by a visit to the Vasa museum in Stockholm and the seafaring history of the island of Gotland, where the meeting was held:

For hundreds of years, sailors on long sea voyages suffered from bleeding gums and wounds that would not heal.  The disease is called scurvy in English – skörbjugg in Swedish. In 1601, a sea captain in England conducted an experiment using 4 ships. One ship’s sailors were had lemon juice added to their diets, 3 other ships did not. The sailors who got the lemon juice were much less likely to get scurvy. This was confirmed in further experiments throughout the 17th and 18th centuries, but it was not until 1795 that the British Navy started using citrus juice on all their ships and wiped out scurvy among their sailors.

200 years between discovery and widespread adoption! Why? One reason is that the people affected by the disease had no access to information about the cure and, even if they did, they had little control over what food was sent on the ships where they worked. It was an economic and strategic decision, finally, by leaders, to add citrus fruit to sailors’ diets and improve or save their lives.

Keep this in mind as I describe more recent history. Who has access to the information? Who is experimenting with cures and innovations that might change the world?

I’d love to hear what people think of the ideas and examples I lay out in the talk — the Cystic Fibrosis Foundation, PatientsLikeMe, the C3N Project, and others. Please share your thoughts in the comments!