“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
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?
e-Patient Dave says
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.
Susannah Fox says
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)
Christine Kraft says
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!