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

The Decision Tree: How Better Health Can Scale–Susannah Fox

“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.”

“Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to demand our information.”

“When people take a participatory role in their health, we see improved outcomes.”

These are just  a few of the insights you’ll hear if you listen to the full audio track of my conversation with Thomas Goetz, author of The Decision Tree:

However, if you can’t spare the whole hour and 15 minutes, you can just dip in to the #decisiontree stream: Continue reading

Health 2.0 Europe: A Moveable Feast–Susannah Fox

Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building.

Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed. Continue reading

Chronic Disease in Data and Narrative–Susannah Fox

For the past 5 months I have been immersed in data and narrative about chronic disease. The result, “Chronic Disease and the Internet,” is a report sponsored by the Pew Internet Project and the California HealthCare Foundation. We find that living with a heart condition, lung condition, high blood pressure, diabetes, and/or cancer has an independent, negative effect on someone’s likelihood to have internet access.

The people most in need of the internet’s in-depth information are among the least likely to have access to it.

The report shows that the deck is stacked against people living with chronic disease. They are disproportionately offline. They often have complicated health issues, not easily solved by the addition of even the best, most reliable, medical advice.

And yet, those who are online have a trump card. They have each other. This survey finds that having a chronic disease increases the probability that an internet user will share what they know and learn from their peers. They unearth nuggets of information. They blog. They participate in online discussions. And they just keep going.

Here are some questions and answers about the report: Continue reading

Access is (almost) everything–Susannah Fox

Or: Why health geeks should pay attention to internet access geeks.

The Pew Research Center’s Hispanic Project and Internet Project just released an in-depth look at internet penetration across racial and ethnic categories in the U.S.: Latinos Online, 2006-2008

From 2006 to 2008, internet use among Latino adults rose by 10 percentage points, from 54% to 64%.  In comparison, the rates for whites rose four percentage points, and the rates for blacks rose only two percentage points during that time period.  Though Latinos continue to lag behind whites, the gap in internet use has shrunk considerably.

Most of the growth is coming from foreign-born Latinos and those living in lower-income households. Native-born and higher-income Latinos, like non-Hispanic whites, may have already reached internet saturation in 2006.

Another group that has not moved the needle since 2006: people living with chronic conditions. Continue reading

Participation Matters–Susannah Fox

In politics and in health care, participation matters as much as access.

The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in your work to harness that passion? Continue reading

Patient Voices at CHCF’s Chronic Disease Care Conference–Susannah Fox

This is the second in a series of posts about the California HealthCare Foundation’s Chronic Disease Care conference (the first was Happy Dogs in a Pile of Sticks).

Patient Voices: Managing Chronic Conditions, Living our Lives

Ted Eytan snapped a photo that captured this session: Patient Involvement Makes People Smile

Here is each person’s story: Continue reading

Happy Dogs in a Pile of Sticks (Spreading Improvement in Chronic Disease Care)

The California HealthCare Foundation’s Chronic Disease Care conference was so packed with great panels that I needed help choosing my targets. Here is the first in a series of posts about this event.

Spreading Improvement: After the Innovators/Early Adopters
Continue reading

Patient Involvement Makes People Smile–Susannah Fox

Ted Eytan’s Photo Friday features a crowd of chronic disease care providers listening to patients tell their stories — and smiling as they see the impact of what they do. As I wrote in the comments, I’ll post here soon with more notes, but this photo is a good start toward understanding the impact of the event.