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.
“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.
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.