Flashback to the Future

One year ago this week I was in Sweden to deliver a talk at Almedalen, a festival of ideas held on the island of Gotland.

This year, my community colleague John Nosta brought the latest in American ingenuity to the same event, telling the crowd that digital health is not a far-off promise, but instead simply requires the implementation of technology that exists today. I’ll update this post when The video of his talk is up and you can check out his tweets.

Two essays I wrote about my own trip:

The comments alone are worth a click — fascinating conversations about interoperability of health IT systems, collectivism, equity, and value networks. The conversation is never over, so please post new questions and comments if you see something that inspires you!

The Power of Connection

Portraits of past HHS secretaries above Post-its

Portraits of past HHS secretaries overlooking an IDEA Lab design session

Technology enables the mission of U.S. Department of Health & Human Services (HHS). It widens access to information and tools and pushes power out to all parts of the network, from our colleagues in the federal workforce to our fellow citizens. At HHS, we seek to create a learning system that recognizes the potential of every stakeholder in the network to contribute, from patients and caregivers to clinicians, researchers and policymakers.

The CTO of HHS serves the Secretary and the agency by bringing new approaches to the problems faced by those on the front lines of medicine, public health, and social services.

I see the role as a spotlight and a beacon, highlighting the innovative work being done inside and outside the federal government and inspiring people to reach higher, in service to citizens. Continue reading

Parkinson’s For One Day

My new job is wonderfully immersive. I leave home early, come back late, and, in between, spend hours talking with people about the future of health, health care, and technology (broadly defined). The HHS IDEA Lab blog will be my outlet for sharing ideas related to the work I do there. This site will serve, as it always has, as a sandbox and outboard memory — the beginnings and middles of ideas, not always the polished ends.

For example:

One week ago I participated in an empathy exercise organized by Smart Patients: Parkinson’s For One Day.

My partner was Gretchen Church, co-founder of Movers & Shakers, a national Parkinson Disease support and advocacy organization. She and I talked for about an hour on Friday night and she started sharing pictures on Twitter, like this shot of her medications:

Pill bottles

I wore a 10-lb. weight around my right ankle and, at Gretchen’s suggestion, a high heel shoe on my right foot and a sneaker on my left. In this way I had to be aware of my gait and balance. Plus she assigned my two sons a job: to say “Freeze” randomly throughout the day. I would have to stop in my tracks for at least 30 seconds. This would mimic the challenge that people with Parkinson’s have, particularly when crossing the street. Continue reading

Troublemaker vs. Rebel

List of attributes: troublemaker vs rebel by Lois KellyI adore this slide that Wendy Sue Swanson, MD, captured during a presentation by Helen Bevan. The list was formulated by Lois Kelly and I highly recommend exploring her site: Foghound.com.

The word pair that resonates most with me is “alienate vs. attract,” possibly because it reminds me of my grandmother‘s advice: You catch more bees with honey than with vinegar. How about you? What resonates?

Quantified Self Public Health

Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society.

It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read my round-up post, which also links to others’ blogs). Follow the tweets on the #QSPH hashtag, too.

Observations and conclusions from last year’s QSPH event were captured in an in-depth report (PDF) and in a series of videos. Here is one of my favorites: Ian Eslick’s talk on the role of personal experimentation in the medical and scientific process:

This year it will be my privilege to interview Don Norman, a design pioneer, on stage.

To prepare, I’ve been reading sections of his books, The Design of Everyday Things and Emotional Design, and watching talks like this one:

I was struck by three themes of Norman’s approach:

1) Solve the correct problem.

My reaction: Boy, does health care need to grok this point. I can’t wait to ask him how to recognize when you’ve dug deep enough into the roots — and what tools to use to get there.

2) Pleasant, attractive things work better.

Reminds me of Michael Graves’s tart review of his hospital room: “I can’t die here. It’s too ugly.” And then he went on to make hospital rooms more beautiful and functional.

3) There is no substitute for direct observation of and interaction with the people who will be using the product.

Yes! I couldn’t agree more. Participatory research *must* come to health care.

Read the full quote from Chapter 6 of The Design of Everyday Things, and, as a thought experiment, substitute “natives” for “patients”:

Don

This point reminds me of conversations I’ve had with people who design communications for HIV clinical trials. They need to use “one voice with many inflections” — that is, one set of facts, but tailored to the population they are targeting, such as sex workers in Thailand vs. Peru.

Switching gears…

A key element of the QSPH meeting is that it will be populated by toolmakers and tinkerers. People who make and hack their way to insights about health. So I’m also reading Mark Hatch’s book, The Maker Movement Manifesto.Book cover: The Maker Movement Manifesto

One of my recent obsessions is the health innovation that is happening at home — the hacks, tips, and tricks that regular people invent to make their lives better. Some are simple, like using a baker’s spatula to turn a large person in bed or sticking a pen through a tennis ball so someone with low dexterity can write. Some are more complicated, like the Do-It-Yourself-Pancreas-System or the Auvi-Q epinephrine injector (both created by people living with the conditions being addressed).

How might we harness the energy of all the people who are making a way out of no way, every day, in health care (that is, patients and their loved ones)? How might we empower them with data and resources? How might we learn from them, and them from us?

Please let me know if you have a question for Don Norman. I know our time will go very quickly, but I want to squeeze as much as I can into the conversation!

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

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