CNN’s Elizabeth Cohen makes a compelling case in her column today: How to get Kennedy-esque health care on your budget. Anyone with internet access can gather the information they need to make better health decisions, as e-Patient Dave and Karen Parles did, and refuse to take “no” for an answer, as Sen. Kennedy did.
patient networks
Raise Awareness of the Reality of Rare Disorders–Susannah Fox
Wendy White, Founder and President of Siren Interactive, contributes this essay: One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on Feb. 28, 2009, is an opportunity to change that.
Doing Our Best to Blow Your Minds (Emerging Trends in Chronic Disease Care)
Here is my third post in a series of look-backs at the November 2008 Chronic Disease Care conference in San Francisco. (OK, yes, it’s now January 2009 — I’m savoring the experience, not Twittering it!) The first post was about spreading improvement beyond early adopters, the second was devoted to patient voices, and this will […]
Friends, Family, and Post-surgical Outcomes
An article in this week’s Journal of the American College of Surgeons shows that “patients with larger social networks showed better outcomes than patients with small or nonexistent social networks.” Here is the abstract (note: the first time I clicked through to the site I was able to access the full-text version but now I […]
E-patients With Chronic Conditions–Susannah Fox
Sometimes my research becomes a little too much for me to bear alone. Like when I find that people living with chronic disease and disability are among the least likely to have access to the internet, but who, once online, are among the most avid e-patients. Or when I am emailing with an ACOR member […]
Online Patient Groups
Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others. Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.
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