Society for Participatory Medicine
e-patients.net blog
Pew Research Center
demographics, trends & principles
Mobile, Social Health at the National Library of Medicine
Update: The NLM released new widgets on July 14, along with a redesigned MedlinePlus site. (Read @eagledawg‘s take on these new tools, as well as her response to this post.) Speaking to the senior staff of the National Library of Medicine last week was like going before the best kind of murder board. Picture it: [...]
Read Morepatient networks, policy issues, positive patterns
The Decision Tree: How Better Health Can Scale
“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 [...]
Read Moredemographics, trends & principles
Health 2.0 Europe: A Moveable Feast
Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building. Health 2.0 Europe began, for me, in February, [...]
Read Morepatient networks, understanding statistics
Chronic Disease in Data and Narrative
For the past 5 months I have been immersed in data and narrative about chronic disease. The result, “Chronic Disease and the Internet,” is a report sponsored by the Pew Internet Project and the California HealthCare Foundation. We find that living with a heart condition, lung condition, high blood pressure, diabetes, and/or cancer has an [...]
Read Morepositive patterns
Designing for Better Health
This is a banner week for people who think good design contributes to better health. On Monday, DiabetesMine and the California HealthCare Foundation launched the 2010 DiabetesMine Design Challenge. Last year the contest garnered more than 150 entries and awarded a grand prize, a “most creative” prize, and a kids’ category prize. I can’t wait [...]
Read Moretrends & principles
Health Sites: Some Are More Equal Than Others
Update: Roni Zeiger of Google Health emailed me and gave permission for me to post the following statement, which I think is a helpful addition to the conversation: Health information is obviously an important category of information users are looking for. For this health search feature we decided to offer users one source each from [...]
Read Moredemographics
Access is (almost) everything
Or: Why health geeks should pay attention to internet access geeks. The Pew Research Center’s Hispanic Project and Internet Project just released an in-depth look at internet penetration across racial and ethnic categories in the U.S.: Latinos Online, 2006-2008 From 2006 to 2008, internet use among Latino adults rose by 10 percentage points, from 54% to 64%. [...]
Read Moregeneral
Participatory medicine and health data rights on NPR
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on [...]
Read Morepolicy issues
Tell the FDA the whole story, please
I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…) So when I saw Jonathan Richman‘s tweet the other night, I couldn’t resist it: Anyone ever seen data on the overall accuracy of [...]
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