• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Writing
    • greatest hits
    • beauty and wonder
    • demographics
    • featured commenters
    • health data
    • key people
    • peer-to-peer health care
    • positive patterns
    • public Q&A
    • trends & principles
  • Research
    • How Young People Use Digital Media to Manage Their Health
    • Digital Health Practices Among Teens and Young Adults: Key Findings
    • Fact sheet: teens and young adults, social media, online health resources
    • Fact sheet: differences between young women and young men in their use of social media, online health resources
    • Pew Research: Americans’ Data Worries
  • About me
    • Now
    • Curriculum vitae
  • Upcoming events

The Decision Tree: How Better Health Can Scale

May 1, 2010 By Susannah Fox 3 Comments

“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:

A conversation with Susannah Fox and Thomas Goetz

View more presentations from Pew Research Center’s Internet & American Life Project.

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

Leroy Jones captured the audio for our exchange about family history, genetics, disparities, and how wireless access is transforming our understanding of the “digital divide.”

Mark Scrimshire wrote a very good, short summary of the event as well as a follow-up post, Should patients have access to their data?

Mary Fletcher Jones created a video excerpt, in which Thomas commiserates with me about how depressing data about chronic disease can be, but how, on the flip side, it is inspiring the see the possibilities of open sharing such as on CureTogether and PatientsLikeMe:

I loved seeing all the tweets during and after the event, including one from Alan Viars affirming Thomas’s assertion that pregnant women are natural Quantified Selfers — he had no idea that his own wife has been keeping a symptom-tracking spreadsheet!

For those who were there, or tracking the tweets, what has stuck with you?  What other questions do you have for Thomas or for me?

Share this:

  • Click to email this to a friend (Opens in new window)
  • Click to print (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Filed Under: health data, patient networks, policy issues, positive patterns Tagged With: 23andme, chronic disease, CureTogether, Decision Tree, digital divide, Genetics, getupandmove, Health Data, Hipaa, patientslikeme, Pew Research Center, susannah fox, Thomas Goetz

Reader Interactions

Comments

  1. e-Patient Dave says

    May 3, 2010 at 11:15 pm

    Susannah, this audio is a gift to us – lately I find I’m getting to absorb content via audio, by turning it on like an NPR radio program, while I do things in another window. Thanks!

    I was interested to hear that you were bummed out for months while absorbing the data from your chronic disease report. In light of that, I especially applaud your eventual discovery of “they have a trump card: they have each other.” It’s a truly important realization, which mere number-crunching wouldn’t reveal: when they go online, a bigger goldmine awaits them than most people have.

    Reply
    • Susannah Fox says

      May 4, 2010 at 9:36 am

      Thanks, Dave!

      I can almost guarantee that if you spend enough time with stats like “only 47% of U.S. adults living with a heart condition go online” and you unpack all the reasons why they are offline, you will get bummed out. See: http://bit.ly/cuavFV for the education/income breakouts, for example.

      Two things saved me:

      1) crunching the data six ways to Sunday to understand the factors behind the results (and discovering that very intriguing “chronic disease effect” on people’s use of social media for health)

      2) reading the stories told by the PatientsLikeMe and HealthCentral respondents who are living the data and, in many cases, thriving despite all the pain, uncertainty, and unanswered questions (instant perspective and a reminder that the best research combines listening AND asking)

      Reply
  2. Christine Kraft says

    May 7, 2010 at 5:11 am

    Launching this audio recording over coffee this morning. The quality of the sound recording is excellent.

    Thanks, Susannah, for enabling all of us to participate!

    Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Before Footer

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Recent Comments

  • Kevin Lawrence on Caregiver starter pack: “We recently read The End-of-Life Handbook in our book club on Smart Patients. It’s aimed at caregivers rather than patients…” Feb 2, 09:41
  • Susannah Fox on Patient-led innovation: “Thank you! I’m very happy to know about your work and will add it to the list.” Feb 1, 09:19
  • Andrea Pauls Backman on Patient-led innovation: “Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by…” Feb 1, 08:58

Footer

Follow me on Twitter

My Tweets

Topics

  • Beauty and Wonder
  • Demographics
  • Key People
  • Participatory Research
  • Peer-to-Peer Health Care
  • Positive Patterns
  • Public Q&A
  • Trends and Principles

popular posts

  • Caregiver starter pack
  • "A jumbo jet a day" - who said it?
  • Hack needed: Tiny pills, trembling hands
  • Patient-led innovation

Explore

Copyright Susannah Fox © 2023 · WordPress · Log in

loading Cancel
Post was not sent - check your email addresses!
Email check failed, please try again
Sorry, your blog cannot share posts by email.