Search all of the Society for Participatory Medicine website:Search

“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:

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?

 

Please consider supporting the Society by joining us today! Thank you.

Donate