Finding reputable information online can be hard. It’s even more difficult when someone with “MD” after his name publishes inaccurate information.
As far as I’m concerned, doctors can write pretty much whatever they want on blogs. I might not agree with opinions expressed, I might disapprove of the unprofessional tone a few blogs take, but they’re blogs and not usually purporting to provide medical advice. It’s different when someone has a website for a medical practice and is supposedly providing patient information.
Medical explanations on practice websites ought to be accurate. The above-pictured sample is inaccurate and harmful. Patients struggling with a decision on what type of medicine to take wonder why their doctor wants such strong meds, yet this doctor on the internet says conservative treatment is fine. Patients who take the plunge and fill a DMARD prescription have spouses/siblings/parents try to dissuade them because they found a website saying they don’t need anything more than simple ibuprofen. Patients struggling with the fact that most of the world has no clue about RA also have to deal with doctors who can’t tell the difference between RA and OA.
Rheumatoid arthritis needs early, aggressive treatment. You will piss off the RA community if you publish bad advice on this subject. We had a very difficult time finding good information when we were diagnosed, and are trying to make life a little easier for those who are unfortunate enough to come behind us. NSAIDs do not lead to a good outcome. DMARDs are needed. If milder DMARDs fail to work (it’s the med that fails, not the patient, btw), then biologics are needed. It is scary enough to read the side effects of these medicines and contemplate taking them, without having a medical doctor telling people that they only need conservative treatment.
I’m truly astonished at how bad just a few paragraphs can be and still get published. If this were handed in as a school assignment, it would be returned with red ink all over it and have to be re-written.
Web pages like this scare me. I don’t think I will ever again believe that “MD” after someone’s name automatically equates to credibility when discussing medical information. The fact that a surgeon (substitute specialty of your choice here) gets referrals for RA patients does not necessarily mean that the surgeon (__) has kept current on rheumatology.
Consider the source. Don’t ask a neurologist for advice about cardiology. Don’t ask a surgeon about RA treatments.
Edit to add:
Just to clarify, I have intentionally not named the doctor who wrote the article in question so that googling his name won’t bring up this post. I believe that:
- the author does not understand RA enough to be publishing online definitions.
- people should look at the article in context. The author is a surgeon. A surgeon’s website about how to deal with back pain is going to have the option of surgery as a presupposition, whether or not that is explicitly stated. Surgeons tend to define “conservative” as “not surgery,” so it is reasonable to believe that the author did not intend to say “stick with NSAIDs; avoid DMARDs and biologics” but might have meant “try medicine/PT to treat this, instead of jumping straight to surgery.” That is not what he says, but it’s entirely reasonable to think that’s what he intended to say.
- the author needs to update his website to reflect current medical knowledge of RA.
Pharmacy Chick has a post up about tools of the trade – mostly special pharmacy spatulas (some of which look a whole lot like cake decorating spatulas) and counting trays. In the comments section, two different pharmacists commented on how much they love their staplers.
Love staplers? Me – I hate it when the pharmacy uses a chunk of bent metal to attach my med info to the bag.
- I can’t read the med info when it’s stapled shut. Since pharmacists have been known to complain on their blogs that people don’t read those med inserts, maybe they should quit stapling the things closed, making it impossible to read them!
- That receipt that’s stapled to the bag is part of my tax records. I have to detach said receipt without ripping, shredding, or otherwise mutilating it because my accountant is funny about those receipts being legible.
- When the tech has to do anything other than hand me the bag, she rips that tax deduction receipt – and then re-attaches the pieces with another staple and acts like it’s completely unimportant that I will be obligated to attempt a repair job. Argh!
I’m sure it’s faster to staple something to the bag instead of handwrite a name, but it would be nice if that staple was through the empty end of the paper instead of smack in the middle of my receipt. I hate knowing that a wrestling match with a staple-remover will follow every trip to the pharmacy.
Even better would be if the pharmacy printer were to spit out one label for the bag (one per patient) at the same time it prints everything else related to a prescription (bottle label, receipt, drug info…). Surely it would be simple to slap that label on a bag of meds – even easier than locating a stapler and keeping it filled.
I do not love my pharmacy’s stapler!
Research costs money. Finding a cure for autoimmune diseases is near and dear to my heart, so last year’s Christmas bonus was used to make a small donation toward research (this is not a big deal; many people donate much larger amounts, but I figure that even small donations add up). Since making that donation, I’ve discovered that I should have done my homework first and found a different organization. Name recognition isn’t everything. How is the money used?
The donation form for this organization had a few extra questions:
- Do you want a thank-you gift acknowledging your donation? No. Just send me the tax receipt.
- Do you want to receive our print magazine? No. I’d rather hear about research projects, but that’s not what you publish.
- Do you want to receive e-mail updates? No. Your website is the least helpful of all the websites I’ve used for information. I’d rather get more in-depth information elsewhere.
Obviously I didn’t add any commentary, just indicated my preferences. The results were interesting, though.
- A gift arrived. I like it, and use it, and even posted a review. But I said I didn’t want it. Gift, postage, and paying for someone’s time to send the thing all took money that could have gone toward research.
- Magazines started arriving in my post office box, despite the fact that I’d declined the magazine option. On my tax receipt, the price of a subscription had been deducted from my donation amount.
- I keep getting e-mail updates. Even though I have jumped through the hoops to unsubscribe (many times), I still keep getting e-newsletters. What’s worse, I get a second copy of some of them with some strange name attached. No idea where they came up with the name, and the unsubscribe feature doesn’t work.
Before I make another donation, I will investigate the organization a little more carefully to see how funds are used. What type of research is being done? How much of the money goes toward autoimmune research? Are they looking for a cause-of/cure-for autoimmunity, or something else? How efficiently is overhead kept to a minimum? How much progress has been made in research funded by the organization?
Because I’m more interested in results than PR.
Edit to add links to rating sites for charities. If you know of other good ones with free internet information, please add them in the comments.