Iodine, a new online database of both prescription and non-prescription drug information, launched today. Users can look up a drug and read about its efficacy, side effects, warnings, and costs. Also included is a consumer-friendly version of the drug’s package insert. In addition, the site provides data from other consumers about their experiences with the drug.
It’s an ambitious project, not helped by Time Magazine‘s subhead “The Yelp of medicine is here.” You see, I don’t particularly trust Yelp comments. Too many people grinding too many axes, posting false comments to influence others positively or negatively, etc. And when it comes to health information, I’m quite the snob. It takes years of professional training for doctors to learn their profession. Crowd-sourced, anecdotal opinions about health, medicine, drugs, etc. are a potentially inaccurate, even dangerous source of information. How is such information vetted? Also of concern is the likelihood that Big Pharma will do everything it can to counter the negative and hype the positive.
In other words, I’m very skeptical about how well Iodine is going to work and how reliable its content will be. However, I’m impressed with the credentials of the people behind it, not the least of whom is CEO and co-founder Thomas Goetz, former executive editor of Wired. So I’ll withhold judgment for now and hope Iodine lives up to its promise of providing accurate, unbiased, easily understandable drug information to the general public.
Note: Don’t miss the Iodine blog. There are some interesting articles, and they’re indicative of the care and thought that has gone into Iodine. My hopes are rising.
I saw this, too, and I thought it was a pretty good idea. About twelve years ago, I took Levaquin for a sinus infection, and it gave me joint pain–awful joint pain. But it wasn’t listed as a side effect–yet. Had I been able to log this information some place, this side effect would have been added a lot sooner (perhaps). I had a good pharmacist, though, and he told me that some other patients had noted this same issue. So, there is value in the “Yelp” effect….
So the joint pain you experienced is now listed among the drug’s possible side effects? The possible side effects that the FDA lists have to be compiled during clinical trials and via consumer reports. But I always have in the back of my mind people in public forums and surveys who don’t know enough to separate coincidence or correlation from causation, or don’t comply with dosage instructions, or don’t have sense enough to come in out of the rain, etc., etc.
I read Medscape faithfully. (It’s the only thing I’m faithful about, haha.) So I see all the studies. There was a serious of studies done about quinolones a few years ago, and in that joint pain was noted. When my son was prescribed a quinolone, I noticed that it did indeed say joint pain…
I usually check several sites that keep track of the listed side effects, interactions, etc., as well as check patient reviews when I can find them, so I’ll probably add this one in the next time I’m prescribed something new. I do, though, always take patient reviews with a grain of salt because, in addition to those reasons you listed, drugs don’t necessarily have the same effects on everyone. Some of the side effects I get from high-dose erythromycin, for example, are outside the norm. Underlying conditions and drug interactions sometimes make a big difference.
Plus, if they’re badly written, my eyes will probably roll away since I just can’t stop editing. 😀
Yes, I’m like you. I research everything new or different. The doctors must hate me. “Snotty doctor’s kid reads the Internet and think she knows as much as I do.” No, seriously, they can usually tell from your conversation and questions if you are knowledgeable, and they respect that. At least, mine do. Good thing, too, because I hate to be talked down to.
Ha! I love my doctor; she’s as obsessive as I am. 😀
My PCP moved to a new practice about 6 months ago and I had to decide whether to go with her or stay with the group she’d been in, that I like very much. My first appt. is next month. I’ve enjoyed the smaller group, all the support staff, the facilities (lab, imaging, offices all in the same place).
The old doctor’s new location is with a Centura Health group and when I called to see about an appointment, I listened to voice mail runarounds for15-20 minutes before I finally got a message saying leave my number and they’d call back. I’m not going through that every time I need to make an appointment or ask a question.
That would drive me crazy! My current doc was the other one in the practice; the one I was seeing left to do hospice full-time. It turned out to be a good thing for me, and I love that the staff makes you feel like it’s a small town because they make sure they know every patient.
Mostly I tend to research my dog’s drugs… Currently for arthritis and previously for canine erlichiosis.
I start with the manufacturers site, then any EU info, comparative RCTs with similar drugs etc etc.
I might look at anecdotal info, but when choice is limited, the official info is usually sufficient.
I have several sites I check for medical infor — Mayo Clinic, WebMD, etc. — but drug information has been catch as catch can. Usually I look for the package insert somewhere, but I’m always a little skeptical even about that.
Mayo was always, and still is, one to go to.
Because of my background in the UK NHS I know some of the better UK sites.
Package insert fascinates me, I’ve only come across it this week. Must be an American thing. I don’t ever remember it being called that in the UK. It was more on the lines of ‘ have you read the information that came with the drug?’
Here you often have to find the inserts on line because you don’t get them with your prescriptions. I like to read them because they are “straight from the horse’s mouth” rather than distilled through some third party (I like to think I know as much or more than some of those third parties).
With some medical background, mostly ‘just enough to ask questions’ as well, I want to know my meds – what they will do TO me as much as FOR me – before swallowing. Have been fortunate with a PCP who isn’t intimidated by questions. Iodine may not be perfect, but a new tool with more info to consider. Thanks for sharing the news!
I have to assume they are still building their database. I tried looking up some example drugs last night and they don’t list Premarin. Big surprise and big disappointment.
I need to remember to check back later… of 3 rx meds, they had 2 of them, but on one of those, they wanted my opinion to build their age-specific section. Too few entries for the older category to include, yet. For the one with a complete entry, nothing i had not heard before. The pricing data seemed a bit off, but my insurance doesnt pay well for newer meds. Hope they continue to develop the site–
I hope so too. But if too many people can’t find the drug they’re looking for there, they probably won’t bother going back. Surely Iodine could have picked up a full formulary from the FDA or somewhere, and then just built on that. Launching without a listing for something as common as Premarin doesn’t strike me as the smartest move …
WIred is a good source, so like you say, there’s hope…the format looks clean
Web MD is often in need of updating these days. Mayo and the online “package inserts” are good sources. THese day, you need to be informed as much as possible. Luckily when our Doc(trained by my father-in-law) retired, his daughter stepped in. She’s good – and touches base with her dad about your history if needed. The group has prompt office/ phone staff and we are able to email for requests/appointment (or call in…they are very patient when I keep losing my patient number – who keeps that?) and go online to our “folders” We’ve already told her if she moves out of this group, we’re going, too. This whole medical treatment game has changed….best look after yourself as much as possible these days.
Oh how I envy your family-doctor connection. I lost the connections I had when I left OKC, although most of the doctors I’d known for so long (and who knew my dad) had retired by then. I got so spoiled. The system just doesn’t work that way anymore.
I am surprised that nobody in this string mentioned Medline Plus. That happens to be the primary medical web site funded by our tax dollars and totally free of advertising (naturally). It covers not only all drugs by brand and chemical names but every health topic one can think of. And, it’s easy to navigate.
Taking a cue from Debora Mitchell I looked up Levaquin on Iodine, just for kicks, and compared that to its Medline Plus entry. Iodine is simpler, but I note that it did not alert about many things mentioned by Medline, including rash. As it happens, my wife was prescribed Levaquin about 8 years ago and she went into anaphylactic shock in reaction to it. It nearly killed her and led to a very unpleasant hospitalization. I’m also leary about taking guidance from a multitude of individual experiences. Medline lists those reactions that are statistically significant and those lists are typically quite long, but at least they are vetted by scientists.
One more thought occurs: I wonder how is the Iodine site funded? I don’t see any advertising (yet), but this can’t be cheap. Color me skeptical (like you, PT, only probably more so.)
I forgot Medline. It’s another one I often check. And I think I mentioned above how skeptical I am about reports from the public. Google may have vetted some of the responses in some way, but it’s still non-professional opinion. (I’ve seen some really ignorant stuff in public forums.) At least the side effects reported to and by the FDA are professionally vetted.
Good question about the funding for the site. I suspect it was somewhere in the back of my mind when I worried about how the pharmaceutical companies might try to influence what appears there.
Found this at insurancenewsnet.com:
I haven’t looked up the background on any of those investors.
Interesting. “Investors” don’t invest in operations that don’t make money. Like WordPress, they are going to make money somehow.
No telling what they’ll do, but for speculation it’s interesting to read the Revenue, Business Models, and Criticism sections in the Wikipedia article on WebMD.
That was informative. Thanks. I also noted this, under the heading of “Revenues”:
Big Pharma is still probably the most lucrative business in the country, but shareholders and ancillary businesses like advertisers got used to the inflow, I think. Things can’t be too bad, patent-wise, or there wouldn’t be new competition.
Hopefully youve already seen this– i quickly cked your archives & did not find it. May 15 2013 article, “Dirty Medicine” in Fortune Magazine, by Katherine Eban. About the colossal fraud perpetuated by Ranbaxy– most popular bad drug is generic Lipitor. A link lists their generics here in the US.
No, I’d not seen that article. Disconcerting to say the least. Growing up with and working among doctors, I was very suspicious of and slow to accept generic drugs. I didn’t trust them to be pure, bioequivalent, etc. But the cost differential was impossible to ignore and they are so widely prescribed, it was increasingly hard to avoid them. I’m still not a fan of foreign manufactured drugs and I’m frustrated with a government that won’t act to negotiate lower prices on American made drugs for Medicare patients. There are probably some bad actors among American companies as well, but at least we have some regulation and oversight here.
So many shortcuts and flat-out omissions and lies where our health is concerned. Have been wishing for generics for my high $$ brand meds (2 ea bid) but looks like it is still safer to spend the extra for the good pills. This better not be price-gouging staged by the drug companies. The doc i worked for would ok some generic substitutions, but he was adamant for brand on others… never understood till now. Patients felt he was cheating them not allowing the generic, but now i see he was truly working for their good.
Some drugs are so critically important that one dare not trust generics.