Once a day (but often more), a frustrated patient thrusts reams of pages downloaded from the Internet into my hands. The fact that someone researches their condition excites me, because knowledge is power. That the information they receive is often drivel, saddens me to no end. Misinformation raises false hope, causes some to make potentially dangerous medical choices, and leads many to spend a lot of money on therapies that have no hope of helping. On top of it all, undoing the false gospel is very, very difficult.
As I practice chronic pain I see a lot of women with vulovdynia. When they have researched their condition on line at the National Vulvodynia Association’s web site they come in well informed and are ready to engage in their care. If they find information from a famous and “wise” gynecologist, they invariably have invested a lot of time in the calcium oxalate diet (proven ineffective by evidenced-based medicine) or worse, The Master Program for Optimal Hormonal Balance and Pelvic Health (just writing that last piece of tripe made me want to throw up).
So how does a patient know what is good, reliable medical information and what belongs in the trash? And then what about industry influence? Many doctors have good intentions with what they write (or tell patients in their office for that matter), but the sad fact is the pharmaceutical industry exacts a particular kind of bias. There was a great review published in JAMA in 2000 (JAMA 2000;283:373-380) that tells us the following:
- Receiving gifts from pharma impacts prescribing behavior. The relationship is dose dependent.
- Accepting samples is associated with awareness, preference, and rapid prescription of a new drug.
- There is an association between industry paid meals (drug dinners) and getting a drug on formulary. Also a dose dependent relationship.
- Attendance at grand rounds given by a physician pharmaceutical representative is associated with both appropriate and inappropriate decision making.
- Taking research support is also associated with requesting that a drug be added to the formulary.
I don’t think it’s a big leap to think that Pharma interactions must also influence on line content. If fact, I bet Big Pharma is counting on it.
And what about doctors that actually accept Pharma sponsorship? Sadly, this is not an if. One doctor I know accepted a good chunk of change to sponsor her book tour. She references the brand name in her blog and has also mentioned it in tweets. While at least she is open about being sponsored, it really gives me cause to think, because her web site is essentially paid product placement.
We need some way for patients to know if a post is well researched or not and if it is biased. And if bias exists, we need to be clear about how that might affect the quality of information. We can get board certified, we can get labs CLIA certified and we display those credentials for the public to see. Why not use that same principle and have some kind of “stamp of approval” for medical blogs adhering to the ethical principles of medical blogging? There is a general blogging with integrity pledge and I recommend that every medical blogger read it. I think this basic set of principles could be a launching point, but I think we need more.
I don’t know what the final result will look like, but I’m going to give it a go. I have asked a bioethicist to help as well as a contact at the Pew Prescription Project. I’m looking for a few more good minds and of course lots and lots of ideas. Whether people chose to adopt what we come up with or not, that’s another thing. At the very least it will give us all something to think about.
Here are some of my thoughts (BTW I don’t have the answers)…
- If you can’t reference it in PubMed then your post should it be listed as “opinion”. Which is ok, patients often like to hear a doctor’s opinion (how many times have you been asked, “What do you think, doctor?”), but we need to know “evidenced based” or “opinion.” Because there is a difference.
- If you accept pharma money, you should disclose it and how any product that company makes relates to your post. Journals require that, why should a blog be of lower quality? Understanding bias helps people frame what they read.
Here’s an example of how I might think about applying the principles…
- If you want to blog about the safety of vaccines, can cite sources in PubMed, and do not take industry money, your post would be listed as evidenced based with no conflict of interest.
- If you want to blog about the safety of vaccines, can cite references in PubMed, but have taken money from a company that manufactures vaccines, you would list the post as evidence based and disclose your conflicts.
- If you want to blog about spacing vaccines because you are concerned about the antigen load and can find references in PubMed to support you assertions, you can file that post under evidence based. If you have taken speaking fees from any group known to oppose vaccinations, such as Age of Autism, you would list that under your conflict of interest.
- If want to write about spacing out vaccines because you have concerns about the antigen load but have no references, you would file that post under opinion. I might disagree with you (full disclosure), but everyone is entitled to their opinion. If you have a conflict of interest to declare, you would still do list it.
- If you blog about the HPV vaccine being dangerous and that 50+ girls have died from the vaccine despite the fact that only 33 verified temporal deaths have been reported, and after a full investigation no cause and effect was identified, and in addition, a recent meta-analysis of more than 44,000 vaccine recipients indicated adverse events were the same with vaccine and placebo, then at the very least you should know better and are guilty of being lazy with your facts. At the more nefarious end of the spectrum you are promoting some agenda other than health care and your post can not in anyway be considered to have integrity.
What do you think ethical medical blogging should look like? Do you even think it matters?