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!

What health care can learn from Mike Mulligan and his steam shovel

Google is upgrading health search…again.

In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.

Cover of children's book: Mike Mulligan and his Steam Shovel, by Virginia Lee Burton

Continue reading

Weekend update

Last Saturday I posted a round-up of what caught my eye during the week and my friend Andre Blackman (@mindofandre) created this awesome graphic:

Susannah Fox's Weekend Update - credit: Andre BlackmanThus encouraged, here’s another round of what I favorited on Twitter this week:

Nancy Stein (@SeniorityMatter) shared an opinion piece by Rob Lowe about long-term care planning. He’s promoting his partnership with a financial services company, but it’s a good article. I wonder what effect a celebrity can have on this topic. For some, the financial frame might be a good hook. For others, an appeal to intergenerational responsibility might focus the mind: “Take care of Mom the way she took care of you.” We sure need something to break through the denial wall. Continue reading

We are at the beginning of a revolution…

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.

Who is ready to stand naked in front of the mirror of data?

In this talk at the Quantified Self Public Health symposium, I argue that we must respect the context of people’s lives while designing health interventions, tools, and research projects. Not everyone is ready to stand naked in front of the bright light of numbers on a screen. Let’s be gentle in our approach, especially to those living with chronic conditions or caring for loved ones.

Background:

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

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

Health Datapalooza IV

I will be part of a panel on self-tracking at the Health Datapalooza in Washington, DC, on Tuesday. My fellow panelists include Naveen Selvadurai, a co-founder of Foursquare; Roger Magoulas, the director of market research at O’Reilly Media; Jodi Daniel, director of the Office of Policy and Planning at the Office of the National Coordinator for Health Information Technology; and Abdul Shaikh of National Cancer Institute’s Health Communication and Informatics Research Branch.

Naveen wrote an intriguing essay on the topic:

a personal API

Jodi shared this page, part of the ONC’s vision for putting consumers at the center of health care:

Consumer eHealth

Here’s a retrospective of essays I’ve written about tracking and the Datapalooza:

Watch for tweets with the tag #HDPalooza if you can’t be part of the event in person.