Tag Archives: Participatory medicine

What does e-patient mean?

epatient

When I use the term epatients, people ask me what that means? I stumble to explain.

Here is an example from a glossy magazine, Good Housekeeping.

 I started getting connected with other EB parents through my blog. It was a tool God used to save Jonah. I’d describe issues we were facing, like acid reflux or not eating or bandages that stuck, and moms would suggest what worked for their kids. To our doctors’ credit, they didn’t look at me like I was a crazy person when I brought in suggestions but gave them a shot. We all partnered to try to get him as stable as possible.

Read the whole article “My Son Blisters When I Hug Him” here. 

Until I get my elevator speech smoothed out,participatory here is another explanatory link.

 

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Share your medical news – and learn

A friend wrote to me, jubilant, because her husband – diagnosed with a prostate problem — had researched and found a state of the art therapy “green light laser prostate therapy.” it worked wonderfully, she says. Apparently it is not available here in Princeton.

I urged her to try to share this news with others through a social media strategy, participatory medicine. Read about it here on medium. If you can’t get into the medium site, try this one. 

For the experts — what participatory medicine platform would be best for prostate therapy recommendations?