Patient Communities: Which Way Forward?

August 9, 2010 · Filed Under patient networks · 20 Comments 

If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group?

This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.

As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:

Read more

Tags: , , , , , , , , , , ,

The Decision Tree: How Better Health Can Scale

May 1, 2010 · Filed Under patient networks, policy issues, positive patterns · 19 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: Read more

Tags: , , , , , , , , , , , ,

The Decision Tree: What to Expect When You’re Expecting a Long Life

February 14, 2010 · Filed Under general · 32 Comments 

Warning: Do not read The Decision Tree unless you’re ready to make some kind of change in your life.

Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.

There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.

Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He  doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices. Read more

Tags: , , ,