Public Q&A: Online patient communities

A community colleague recently asked me where he might find the latest numbers on the percentage of U.S. adults who participate in online patient communities.

In the spirit of “public Q&A” I’d like to share my answer and ask people to add tips about other resources in the comments.

Up until July 2014, I led the Pew Research Center’s health and technology portfolio. I believe that data is still relevant, so that’s where I’ll focus.

Public opinion polling about a rapidly evolving field is a challenge, to say the least. We constantly talked at Pew Research about how to capture a behavior early, before it morphed into something else, and without naming a certain platform (see: The Twitter Question and Changes to the way we identify internet users.) Continue reading

Hack needed: Tiny pills, trembling hands

Top of a pill bottle reads "Close Tightly" Image by Are W on flickr

A friend writes:

I am sweeping the kitchen and just found one of my brother-in-law’s Parkinson’s pills [Ropinirole].

Every time he has to take it, he drops it. It is tiny and, well, he has Parkinson’s. I can’t tell you how many times the kids end up on the floor looking for the pill he just dropped.

Are there any hacks for a Parkinson’s patient to manage those tiny pills?

For those who aren’t familiar with the term “hack,” its original meaning is “an appropriate application of ingenuity.” I’ve written about home health hacks here and here and I’m actively seeking ways to connect health hackers/makers/inventors with the people who need them. I was thrilled when my friend texted me with this question and I’d love to help.

One idea I had: put a dab of honey on your finger and use that to pick up the pill.

Another idea: ask gardeners how they manage the sorting and handling of tiny seeds.

If you’ve got an idea, please share it in the comments below!

(Image courtesy of Are W on flickr.)

The Value of Data

Health care is in danger of missing the point.

Patient Records by ken fager on flickr

(A repost from 2014 that’s relevant today thanks to announcements at HIMSS.)

In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at U.S.News saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up. Continue reading

A thank you note to Jordan Grumet, MD

I Am Your Doctor, by Jordan Grumet, MDDear Jordan,

You begin your book with a beautiful description of your public writing as a love letter to your patients and to your father, who died suddenly when you were seven years old. My heart opened at that moment and I saw you in a new light. I’ve read your blog and followed your story on Twitter, but reading your book has been a deeper journey. One that I will recommend to many people. 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

Speak up: The network is our superpower

I have a new post up on Medium, illustrated with this gem from a 2012 post:

Fred Trotter: Citation Needed

Thanks to Fred Trotter for adapting this xkcd cartoon

An excerpt:

We can’t let misinformation—or worse—go by without comment.

I think it’s time for more people to speak up in health care.

More pediatricians should express their measles outrage.

More people should chronicle the reality of living with chronic conditions.

Continue reading

What if?

Times Square

Quick explanation: I tweeted “What if this Pew Research GIF was played on a loop in Times Square?” and my friend Mike Lee made it happen (in our Photoshopped dreams).

Pew Research: U.S. Population by Age, 1950-206

What if every conference displayed it on a screen, so that every public conversation in every industry was framed by the context of the coming age boom?

What if we look at this data and ask, as Ai-jen Poo urges us to do:

What joys could getting older and caring for one another bring?

How else might we prepare?

Study up:

Join the discussion: