Inspired by a call for essays about e-patient travel stories:
There is an unspoken code at airport gates. Don’t touch me. Don’t touch my stuff. Don’t step in front of me unless you have a heck of a good reason, especially if I got here before you did. Continue reading
The 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 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
All signs point to a social revolution in health. As I’ve put it, the internet gives us access not only to information, but also to each other. Crucial advice can come from a just-in-time someone-like-you as well as from a clinician.
So what happens to people who are shy or introverted? If sharing and learning from others is a key to health, how might we support those who do not easily participate in social settings, on or offline?
A friend wrote to me this week and gave me permission to share his question here:
While putting a ton of energy into helping guide my dad’s care — he’s not doing terribly, but aging incredibly quickly — I’ve learned I’m unable to be there for my mom as much as I’d like. I’m probably the one person in the world she can most talk to, but I don’t have the strength to also help her with the process of letting go of the idea that we can’t fix him.
She is yet another caregiver who doesn’t have the support she needs.
She’s also very private. She has very few friends she’s really open with and would never consider being in an online community.
What to do? Continue reading
I live (mostly) by Michael Pollan’s advice to “eat all the junk food you want as long as you cook it yourself.” But Halloween is an exception. We live in a Sesame Street-like townhouse neighborhood in Washington, DC, so my kids can easily hit 100 houses while trick-or-treating. The candy haul is epic.
My food-allergic son has always been great about sorting out the candy he can’t eat, but the night can still be stressful, knowing that peanut butter and almond confections are in his bag.
So we, along with many other food-allergy families, embraced a new idea this year: the Teal Pumpkin Project. Started by a food-allergy mom in Tennessee, the idea is that you paint a pumpkin teal (the theme color of FARE, the largest U.S. food-allergy advocacy group) and place it on your porch to let people know that non-food treats are offered at your house. Continue reading
I’m experimenting with a new publishing platform: Medium. I’ll eventually post the entire essay here, but for now I’d love it if you would check out this story — and recommend it to others if you like it!
Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 (an absolutely beautiful fall day).
You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones:
An excerpt of a post on the Iodine blog:
Imagine living with a condition so rare that every time you see a new doctor they confess to Googling it outside the exam room door. Continue reading
“At one level, we just flipped a switch. It wasn’t a complicated, multi-faceted, variegated intervention. All we did was open up the doctor’s notes… Out of that came a cascade.”
- Tom Delbanco talking about OpenNotes and how a seemingly simple change — allowing patients to view clinicians’ notes from their visits — is having a profound effect on health care. (This quote is around minute 13.)
Check out the rest of the line-up for the latest RWJF Pioneering Ideas Podcast and listen to it here:
Where do you see opportunities for simple changes in the way we pursue health? Feel free to comment here, on the RWJF podcast page, or tweet @LoriMelichar, who produces the show.
“What if, in the midst of a crisis in which workflows, policies, procedures, and operations must be altered, the Centers for Disease Control and Prevention (CDC) could distribute an app to emergency departments as easily as a software developer submits an app to the Apple App Store?”
- Kenneth D. Mandl, MD, MPH, talking so much sense about the Ebola crisis that it gives me hope for the future.
Get yourself some: “Ebola in the United States: EHRs as a Public Health Tool at the Point of Care” (JAMA, Oct. 20, 2014)
I see parallels between the current state of health data tracking and the trajectory of adoption we saw in the early days of internet, broadband, and mobile adoption.
Here’s a clip I just found from an interview with WHYY’s Dan Gottlieb in which I explain what I mean by that:
I loved being part of the conversation with Dan, Ernesto Ramirez, and Heather Patterson. Here’s the full interview: Self-Tracking: Quantified Self Movement.
If you want to dig in further, here’s the Pew Research Center report I refer to, Tracking for Health, and more essays, speeches, and deep thoughts about the past, present, and future of health data tracking.