This Is MS Multiple Sclerosis Community: Knowledge & Support

Potential Side Effects of Patient Websites
In this age of technology, connecting with others who have MS is as easy as accessing a website designed for those who want to share their experience with the disease and treatments. But do you really know who is delivering the information you receive, and who might be viewing yours? Typically website members can seek out people of the same age, sex, and disease progression by viewing profiles displayed on the site. Among other information, they can see which drugs or doses worked for their counterparts. Additionally, these websites can be a valuable source of information to drug makers who can pinpoint subgroups who report the greatest improvement on a particular medication. They can also be tapped into for the purpose of creating more effective drug marketing.

The lines become blurry in these new arenas, according to a recent article in The New York Times. There are unbranded “disease awareness” online communities where a drug maker may pay people to moderate patient forums or give testimonials but might not prominently display that fact to participants. Other sites collect consumer health data to help drug makers aim at specific kinds of consumers, using psychological cues.

Unlike television viewers, who can immediately spot direct-to-consumer drug ads, consumers on some health sites may not fully understand that they could be subject to marketing or marketing research, even if they have read the site’s privacy policy, according to the article.

“We are talking about a digital pharma stealth economy that is emerging,” Jeff Chester told The Times. Chester is the director of the Center for Digital Democracy, a nonprofit group that works to safeguard user privacy. “You don’t know who is being paid to moderate. You don’t know who’s listening in to your conversation. You don’t know what exactly they are focused on and what they are doing with the information.”

The Health Insurance Portability and Accountability Act of 1996 restricts the way health care providers use and disseminate patients’ information, but entities like consumer health websites are not subject to it. The Food and Drug Administration, meanwhile, which strictly regulates direct-to-consumer drug commercials and print ads, is still developing a policy on drug marketing through social media.


Very appropriate for all of us here.

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

YIKES! I think we all wonder about this, but I had never seen it written before. I hate to think about this. I have made some really important friends here. I hate that we have to be so careful that that we might miss the opportunity to support others fully.

Is that really you... kidding...

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

Here's more:

http://www.clickz.com/3640522

http://www.mmm-online.com/social-media- ... le/131661/

And here you can buy this:

http://www.medseek.com/

http://www.digitashealth.com/

http://www.zeroonezero.com/medical/heal ... e#textonly

http://www.russellherder.com/RH_SocialMedia.aspx

They even have an own award:

http://www.healthleadersmarketingawards.com/


How to find out if something is advertising? Well, the goal of this type of marketing is that you don't. A clue can be to ask: "Who has an (financial) advantage or disadvantage?" If the answer is a single person (selling something) or company, it might be advertising. But sometimes the answer isn't easy to get. In marketing, you consider a frying pan a competition to fast food (as both provide warm meal). So if someone tells you that fast food is unhealthy, he might actually work for a frying pan company

But the point is: If you publicly tell about the positive outcome of your liberation, you actually advertise for CCSVI treatment to some extend. But (at least in my opinion) that's perfectly ok if you aren't fake, your story is true and whole (nothing negative left out). Marketing does not necessarily imply lying, and you cannot completly divide information and advertising.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

cah,
Very interesting links. Most of us are here honestly sharing our experiences, but there are always other forces at work when it comes to money. I love some of these comments:




Then again when you read these comments, some do expect the worst:

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Thanks for that info Magoo and Cah.

I sat on the outside for months reading everything I could on TIMS before I had the courage to come on board.

I am glad I did but it does make you think.

Drury

As a strict rule, nobody should post anything on any public Internet forum that they wouldn't want any individual in the world to read. These forums are all accessible via search engines, and anybody who knows your screen name can quickly find every post you've ever made on any public site you've ever posted on.

Caution, my friends. I'm frankly flabbergasted at some of the stuff some people are willing to post, apparently thinking they are safe under the cloak of anonymity that the Internet seems to offer. The reality is that there are public and private enterprises routinely and automatically sifting through almost everything that is posted online in these post-Patriot Act days. Never forget this.

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Marc
www.wheelchairkamikaze.com