e-Patients Discover Unrecognized Side EffectsComments on: --

By: Monique Landry

Monique Landry — Sat, 11 Jul 2009 14:15:24 +0000

The last post today (July 11, 2009) mentions an MS e-patient community. I have a friend who, after more than a year, has a doctor who’s leaning toward a “probable diagnosis.” I think this community would help her with the uncertainty. How does she connect with this e-community? Thank you for any help you can offer.

By: Judy Feder

Judy Feder — Mon, 06 Jul 2009 14:05:07 +0000

Joe, thanks for this important post. As a long-time e-patient, I’ve known anecdotally that information on little-known side effects is one of the key pieces of wisdom patients seek and share with one another. There’s nothing scarier, when you have a serious medical condition, to experience a symptom that your healthcare providers can’t explain. Your thoughts inevitably drift toward the worst possible outcome. Having others corroborate your experience is invaluable. I was able to test this intuition in a survey I did with Professors Andrea Meier and Bret Shaw earlier this year. (We’ll be presenting this paper at the Medicine 2.0 meeting in Toronto in September). Across very diverse e-patient communities (cancer, MS and Marfan’s Syndrome, information on side effects is the most frequently sought type of information, with almost 90% of respondents reporting that they look for this kind of information. I haven’t seen the statin survey you refer to, but if it’s part of Dr. Beatrice Golomb’s work, I know she has been a pioneer in this important effort.

By: When Side Effects Are Dismissed « Chronic Illness & Pain Support

When Side Effects Are Dismissed « Chronic Illness & Pain Support — Tue, 30 Jun 2009 03:04:51 +0000

[...] The post from e-patients.net stated last week week A Research Letter in the Archives of Internal Medicine (June 22, 2009) gives the results of a patient survey conducted on the patient site askapatient.com. Over the course of three months, 367 people responded; more than 50 percent reported muscle and joint pain with fatigue associated with bisphosphonate osteoporosis drugs. . . [...]

By: SusannahFox

SusannahFox — Thu, 25 Jun 2009 22:47:26 +0000

New post by @JoeGraedon “e-Patients Discover Unrecognized Side Effects” http://bit.ly/4mos5Q

By: Ben

Ben — Thu, 25 Jun 2009 17:07:24 +0000

An interesting idea. There is always a trade-off though. When you are doing a clinical trial on a new drug, you have to balance the need for a representative sample with the desire to not expose patients to any potential harms associated with the new drug.

Any well-designed clinical trial will include pain-scale metrics or other measurements to detect side-effects. The problem with asking patients to report on side-effects is that a properly-designed clinical trial should do this already, but may use a sample size too small to detect all problems, whereas once the drug is approved you can collect data on larger patient populations but it’s already “too late” as the drug is available and in use…