How my food-allergy community “flips the clinic”

May 10-16, 2015, is Food Allergy Awareness Week.

I am grateful to the women (and a few men) who help me care for my son with food allergies. I’ve never met most of them in person, but they are there for me, 24×7, answering questions and sharing resources. Continue reading

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

Find your people

Look Beyond Face Value: Moebius Syndrome Awareness DayLongtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day:

When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get milk. Doctors advised his parents to put him in an institution and forget about him. 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

20 minutes

Food Allergy Awareness Week is May 11-17. I decided to honor it by writing my first public post about being a food-allergy mom. Wendy Sue Swanson, MD, aka @SeattleMamaDoc, is generously hosting it on her blog, where I hope it will reach many, many people.

I’d love to hear what you think — about being a parent, living with food allergies, handling a challenging health situation, whatever this inspires. Please join me in the comments here or on the SeattleMamaDoc blog. Continue reading

Every-day magic

I’ve been following Bertrand Might’s story for a few years through his parents’ blog about his “movement disorder” (which turns out to be related to his incredibly rare condition, NGLY1 deficiency).

Last week, Matthew Might co-authored a commentary with Matt Wilsey in the journal of the American College of Medical Genetics and Genomics: “The shifting model in clinical diagnostics: how next-generation sequencing and families are altering the way rare diseases are discovered, studied, and treated.” Continue reading

Put down the clipboard and listen

Here are the remarks I prepared for the Feb. 6, 2014, Engage & Empower Me class at Stanford Medical School. It’s a long post, so if you’d prefer to zone out, you can watch the video.

In thinking about this class, I thought a good framing question for tonight is: How does change happen?

  • How do political systems change?
  • How do cultural practices change?
  • How do business practices change?

And, more powerfully: How do you recognize when change is happening so you can surf the wave? Or even guide it and be part of team leading the change? Continue reading

Stanford Medicine X: Participatory research

Brett Alder and I spoke last night at Stanford Medical School’s Engage & Empower Me class:

Today is a travel day for me, back to the East Coast, so any comments posted may wait in the queue — but please let me know what you think! I’ll post more about this event when I’m home, including links to the studies and resources I cited. Some are listed on this Storify: Participatory Research. And check the tweets, tagged with #medx.

 

The Lake Wobegon effect in health care — and how to fight it

Humans have a tendency to overestimate our abilities and those of people we trust. It’s been called the Lake Wobegon effect, after a mythical place where “where all the women are strong, all the men are good looking, and all the children are above average.”

It’s a punchline with a dark edge. Consider the following:

According to analysis by the Pew Research Center, women earned 84 cents for every $1 made by men in 2012. Here’s the quote that grabbed my attention:

“While there is a general perception, especially among women, that men have an unfair advantage when it comes to wages and hiring, relatively few working adults report these types of gender biases at their own workplace.”

That is, women believe that discrimination happens, but don’t perceive it happening to themselves.

Here’s another quote that gave me pause, from a This American Life episode about black and white actors hired to try to rent the same apartments, to test if there is a practice of racial discrimination in certain locations. One woman, who is black, was turned away from an apartment building by a super who seemed, to her, to be perfectly affable, but who, in fact, had discriminated against her:

“It wasn’t that she couldn’t believe someone might have discriminated against her in enlightened New York City, but she thought of herself as very good at reading people, how they were responding to her, and she had detected nothing.”

My fieldwork notes are filled with stories about people who believed that their local or primary doctor was enough of an expert to guide them through a rare disease or complicated procedure. Until they found out that the clinician had missed a major clue or did not tell them about a certain drug or failed to refer them to a specialized treatment center. Before that moment, they had detected nothing, no reason to worry.

How did they find out? By connecting with other people with the same conditions online who, having been through it before, could tell them the truth about what they faced — and what they should do next.