Were you a victim of the Vioxx deceptions? Did you ever take Phen Fen or Ketek or Avandia, only to find out you were at increased risk for heart attack or stroke or liver damage — or whatever medical horror may have been the true result of taking the drug?
I could write reams about how these drugs get through the approval process to begin with — but that’s not what will help patients today. Instead, I’m going to tell you about a new resource that involves patients and can benefit patients — one of my favorite kinds of resources!
You won’t find much promotion on this blog — and you never find it in my columns. I just don’t see enough products or services that I think are worth promoting on this website. But last week I heard from some folks who have launched a new website called www.iGuard.org. As near as I can tell, this one can be a winner.
Some background: the Food and Drug Administration (FDA) is the keeper of all pharm drug info. It is up to the FDA to review all drugs and approve or disapprove their ability to be prescribed and sold in the US. Patient-consumers can keep track of those processes on one part of the FDA’s website called MedWatch.
When patients are prescribed a drug that causes them side effects or “adverse reactions,” in particular those that are undocumented for that drug, patients can go to the MedWatch website and report those problems. What happens from there? Not much. The FDA may use the information, but patients aren’t notified, nor can they provide additional input. Eventually, if enough problems are reported by other patients or doctors or hospitals or whatever — then there may be some further research into potential problems with that drug.
That seems like a huge IF to me.
Along comes iGuard.org . A registered patient can upload a list of the drugs they are taking, and reports about those drugs will be sent to them. Included are any pharm drugs, over the counter, supplements, natural remedies, illegal drugs — even caffeine and other substances.
Further, if a patient experiences any problems in taking that drug, the patient can report them back to iGuard.
Yes — patients can participate, and see some results! Unlike MedWatch, there will be feedback as updates sent to the patient when problems are identified.
I tried it myself. I set up a profile — which is done by email address and did NOT ask me for personal information (very good). I got two reports back on each of the drugs I take daily. I was asked to input the name of my doctor so they could report to my doctor. I chose not to do that.
I’m told by the iGuard folks that they gather information from MedWatch, manufacturers and scientific literature.
I did have some pointed questions for them — always keeping that “healthcare is about money” mentality…. how is iGuard paid for? It’s a free service for patients, but of course they need to make their money somewhere.
Their reply, “iGuard received seed funding from Quintiles Transnational Corp and launched in 2007 as a wholly owned subsidiary. It will be funded through the provision of customized research and risk management services utilizing the de-identified data collected from iGuard users. iGuard was launched in 2007 as a wholly owned subsidiary of Quintiles Transnational Corp., the world’s leading clinical research organizations.”
So what does that mean? It means they will be selling the information they gather to certain organizations that are interested (probably health insurance companies) BUT that the information won’t be identified with any certain person (de-identified.)
If you are a patient who is concerned that you may be taking drugs that are causing you problems they shouldn’t cause, or if you have been prescribed a drug that is newly on the market and you are concerned that problems could be identified down the road, this can be a good service for you.
If you have more questions about iGuard, they are doing a webcast and you can participate this Thursday (10/4) at 2 PM eastern. Link here.
|Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate once-a-week or so email tips
Or link here to empower yourself at