People living with rare conditions inspire my work every day. A few resources to check out: Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer […]
peer-to-peer health care
How many people use “ask a doctor” sites?
Here’s a question I received that I thought was worth a public answer: How many people go online to seek a doctor’s opinion about something, such as on an “ask a doctor” site? Pew Research has not asked a survey question that specifically measures that activity, but we have something pretty close, based on our […]
A mirror and a window
I’ve been thinking about the role of the Pew Research Center* in the world, particularly in regard to how we communicate and disseminate our work. Here is my idea: We are both a mirror and a window. We hold up a mirror to society, reflecting back the current state of all sorts of things, like marriage, […]
What if health care dreams started coming true?
Some new “What if health care…?” dreams are circulating and since they are specifically related to my research, I have to call them out. First, check out this article by Eugene Borukhovich about the power of DIY health care tools and self-tracking — and how we need to move toward DIT (do it together): A new […]
The boy with a thorn in his joints (and the mom who turned over every rock)
When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their […]
As the new year incites a rush to become a “new, better and healthier you”…
“…we often do so learning from our peers. When it comes to illness-warranted behavior changes, as like seeks like, it’s often easier to make changes learned from fellow patients with whom you share the experience of a disease.” – Riva Greenberg, The Power of Patient-Expert Books (an article worth your time, particularly if your life […]
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