Just-in-time help

Jodi Sperber snapped this photo of an older man helping a younger man with his tie on the T in Boston.

One man helping another with his tie on the T by jsperber

I love it and shared it online (after getting Jodi’s permission).

Roni Zeiger was one friend I sent it to and he replied, “Networks of microexperts ready to help each other: you never know where that help might come from, you don’t even necessarily know that you NEED the help, but if you’re in a community, they’ll take care of you.”

Wendy Sue Swanson tweeted the image and wrote, “Living in a community: when in need it’s so nice to know those around can help no matter how high (or low) the stakes.”

And Alexandra Drane added her tag line from the Unmentionables panel at the Health 2.0 conference: “Empathy always.”

Gilles Frydman points out that the best advice doesn’t just come from a “just-in-time someone-like-me” but from one who is ahead of you on the path, like this older man helping the younger one.

I’m struck by how often people share stories of serendipity and unexpected altruism when they talk about their health. Has something like that happened to you? Someone emerging at just the right moment to give you the help or advice you needed? If so, I’d love to hear about it, either in the comments or via email: sfoxdc at gmail dot com.

Secret questions, naked truths

My prepared remarks for the Quantified Self Public Health Symposium (here are some notes from the event):

You know when you type the first few words of a query and Google suggests the rest based on what thousands of other people have typed next? There’s a Twitter account called Google Poetics that takes those suggested phrases and makes a poem out of them.

Reading each one, you can catch a glimpse of people’s worries, hopes, dreams, and mysteries.

Start a query with “I don’t know how to…” and Google suggests:

Google Poetics: I don't know how to...

Google Poetics takes the raw stuff of humanity, polishes it up, and reflects it back as something kind of beautiful.

That’s how I think about data. The raw, real stuff of life, polished up, reflecting back. Continue reading

Quantified Self Public Health Symposium

On April 3, I was part of  a symposium organized by Bryan Sivak, CTO, U.S. Department of Health and Human Services; Larry Smarr, Director, Calit2; and Gary Wolf, Director, Quantified Self Labs, where I presented the Pew Research Center’s findings on tracking for health. I uploaded my remarks in a separate post — this one is more of a “notes and impressions” download. 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

The goal posts of life

Earlier this week, John Sharp tweeted a link to a New York Times column by Abigail Zuger, MD, about the “Unworried Unwell” – people who have been told that they are very ill, but do not seem to want to do anything about it. The comments are wonderful, particularly the Reader’s Picks, including helpful tips about how to motivate behavior change or be more understanding of individual choices. Two stood out to me:

[In response to a comment arguing that people who welcome death's release should not be criticized.] Yes, death can be a welcomed relief, however for many people, death typically doesn’t come as a thunderclap, suddenly and all at once. For the woman with the untreated hypertension, she is more likely to have recurrent problems, progressive kidney dysfunction, failing eyesight, repeated mini-strokes, other circulatory issues, in a chronic negative progression rather than suddenly dropping dead (although there are some whose exit takes that path). I have known many elders who are unafraid of death. That’s admirable. Given what I’ve seen in the office what more people should be afraid of is chronic debility and functional losses from un or undertreated chronic diseases. – GeriMD

Never, never abandon a patient. Plato: Be kind, for everyone you meet is fighting a harder battle. – Philip G. Miller, MD

How can we help someone to see that bigger picture? How can we help each other to never abandon someone in need? It’s not going to be yet another study, that’s for sure. (The Onion has it about right: New Study Finds Nothing That Will Actually Convince You To Change Your Lifestyle So Just Forget It.) Continue reading

3 home health care hacks

I recently spent an afternoon with a dear relative who is being treated for cancer. Her medication regimen is so complicated that my mom, an experienced caregiver, visits her daily to help sort all the different pills into all the various boxes (and make sure they get swallowed). They showed off three health care hacks that they’d come up with:

1) A weekly meeting to go over the pill supply. I snapped this photo, but blurred it and cut out the 2-pager my mom uses as a checklist. Note the use of clean surfaces to sort the pills — cutting boards and saucers. During this meeting they agreed that they need an upstairs pillbox (for pre-breakfast meds) and a downstairs pillbox (for the rest) because otherwise she forgets to take the early-morning pills.

Pillbox blurred

2) Our relative recently had a port placed and she needs to keep it dry for 10 days. A friend brought over a handy roll of plastic wrap she bought at a hardware store and showed them how to wrap the area so she could shower. Continue reading

“Pursue hope like it’s an outlaw.”

Quote

- Afternoon Napper during Rare Disease week in Washington, DC

Zebras by schinkerj on Flickr

I love that line and that spirit — and this image captured by John Schinker because it looks like these zebras have formed a posse and are heading out on the trail together. When you hear hoofbeats, think “horses” but don’t rule out zebras.* And if you’re a zebra, find your herd — you’ll be happier and maybe even survive longer.

* Read about Occam’s Razor and a doctor’s perspective on the medical slang term for a surprising diagnosis.

Persistence vs. flow

The Pew Research Center has released its latest report celebrating the 25th anniversary of the Web. This one looks forward to 2025, with experts’ predictions. Here’s my favorite quote so far, from the “Pithy Additions” section:

Jerry Michalski, founder of REX, the Relationship Economy eXpedition, observed, “The Internet gives us Persistence — the ability to leave things for one another in cyberspace, freely. This is a big deal we haven’t yet comprehended. Right now, we are obsessed with flow, with the immediate, with the evanescent. Persistence lets us collaborate for the long term, which is what we’ll slowly learn to do … We will begin to design institutions from a basis of trust of the average person, instead of mistrust, the way we’ve been designing for a few centuries. This will let us build very different institutions for learning, culture, creativity, and more.”

I think this has implications for health communications, such as when we post information online that we hope will persist and be used as the basis for future decisions. The “flip the clinic” movement is part of this — the acknowledgement that a doctor’s appointment is just one opportunity to reach someone with health advice. Continue reading

Health data’s adolescence

I wrote a guest post for the Health Data Consortium — here’s the start of it:

This year marks the 25th anniversary of Sir Tim Berners-Lee’s proposal to create what we now call the Web, the visual, hypertext organizing system which overlays the internet. The pace of internet adoption gathered speed once people could more intuitively point, click, and follow a train of thought without having to type in a chain of commands. I see a clear parallel in the adoption of tools related to health data, most of which are still inelegant, but show growing promise as they become more visual, collaborative, and intuitive. Continue reading

Big (really big) data comes to health care

In December 2013, Kira Peikoff wrote about how, when she had her DNA tested by three direct-to-consumer companies, the results were all over the place. She interviewed experts to get their advice:

J. Craig Venter, chief executive of his namesake institute and of Synthetic Genomics, was a pioneer in sequencing the human genome in 2000. Though he issued recommendations to genetic testing companies four years ago to help them improve their predictions, he remains skeptical of their clinical value. Continue reading