by e-Patient Dave | Feb 27, 2011 |
Again this year, as in 2009 and 2010, we’re pleased to highlight Rare Disease Day (February 28), with a post from Wendy White of Siren Interactive. Here’s last year’s prolog: One profound shift in healthcare enabled by the internet is the Web’s...
by e-Patient Dave | Jan 30, 2011 |
Researching recently I wound up looking at where we were two years ago – February 2009, just as the Society for Participatory Medicine (SPM) was forming. Fascinating to see what topics were live then and are still relevant today – this community has...
by Susannah Fox | Jun 16, 2010 |
Ivan Oransky, executive editor of Reuters Health, provided excellent evidence yesterday regarding the need to look past abstracts of journal articles if accuracy matters to you: His own post on Embargo Watch: “More thoughts on ASCO: How the embargo policy can...
by e-Patient Dave | Feb 21, 2010 |
One profound shift in healthcare enabled by the internet is the Web’s ability to be a common platform for huge numbers of low-volume diseases. This is the “long tail” effect that makes Amazon and eBay a success, selling vast numbers of items you...
by Gilles Frydman | May 6, 2009 |
Clinicians, the Government, and many other groups are working hard to improve health care quality, but it’s a team effort. You can improve your care and the care of your loved ones by taking an active role in your health care. Ask questions. Understand your...
by Susannah Fox | Oct 6, 2008 |
Andrew Schorr’s recent comment also merits a separate post: I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way. I have dedicated my life to creating community online and also, in a...
by Gilles Frydman | Sep 22, 2008 |
Why have rare diseases been so disproportionally represented in the world of internet-based online medical communities since the early 90s? Is there a unique reason to explain why so many of the rare disease patients understood long before anyone else the importance...
by Susannah Fox | Sep 15, 2008 |
The National Institutes of Health recently gathered a group of consumers and people who study them. We met off-site at a hotel in Bethesda, which I thought was an apt metaphor for the day’s question: How can NIH better communicate with the public? First, I said,...
by Gilles Frydman | Mar 14, 2008 |
I am sick & tired of the advice given to people looking for medical information on the internet. All the content evaluation guidelines say the same. Look for sponsorship, currency, factual information and audience. A recent CNN Empowered Patient entry states...
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