Hard Conversations: Vaccines and Autism, Part 1.5

Part 2 was originally going to be a detailed overview of the first of the review articles I mention in part 1. However to be more complete, I’m delaying posting that until tomorrow. This way I’ll also be able to review an article or two suggested by those who believe vaccines cause ASD. I’ll also use that time to discuss why it is important to understand different levels of evidence, and different levels of credentials (Huge hat tip to leigh for the suggestion).

Until I get finished with all that, I wanted to lay down a few thoughts I’ve had since writing the first post and reading the reactions to it.

I’m trying to write as I would talk to a patient, or patient’s family, in the hospital. I hope this leads overall to a tone that’s not at all typical Google U, but much more like the conversation you might have had with your physician, with bonus hyperlinks.

 When I talk to patients, if they’re considering alternative therapies, or alternative explanations for their disease process, I focus on evidence. Maybe I’m not good at presenting evidence, but I have yet to see a lot of patients jump up and say “Yes I’d love to read the New England Journal of Medicine.” Instead I get a lot of “What do you think?” And so within these posts, I’m telling you what I think, but I’m trying to focus on why I think it, and I’d like to convince you with the best evidence we have.

The Google University education, and the celebrity endorsement is beginning to be more trusted than the information one obtains from a doctor. Part of this is our fault; physicians as a whole have had a less than stellar record of communicating well to patients. But another big part of it is just the ease of access to information on the web. The problem is that you can get just as much misinformation, and it isn’t easy to tell which is which.

There’s a reason evidence is important. Evidence isn’t here to hold down good cures. Evidence isn’t here for Big Pharma to hold the little guy down. Evidence is here to stop people from taking advantage of you. Before we studied these things it was easy to be a snake oil salesman. One could knowingly peddle junk to vulnerable people who don’t know better, and make a lot of money doing so. Now a potential solution is checked, weighed, measured, and if it’s found wanting, it doesn’t get very far in clinical practice. Is this model perfect? Of course not, lots of times good drugs take a while to get to market, because it takes a long time to prove things. But one thing evidence based medicine is good at, it’s identifying frauds.

Evidence based medicine also shows us that a lot of our intuitions are wrong. People love finding patterns; we’re very good at it. We’re also very good at finding patterns where there aren’t any. It’s easy to confuse correlation and causation, and it’s easy to see correlation when really there is none.

How does this relate to autism, or our discussion now? One of the reasons why the link between ASD and vaccines seems so obvious to parents is its timing. Autism often begins to manifest right around the ages children are getting vaccinated. It’s so closely timed, that a badly designed scientific study might see a correlation, where a good study would show that this is incorrect. Which leads us to Part 2.

 

On deck, part 2: a discussion of levels of evidence, levels of credibility, and a breakdown of the evidence for and against connecting vaccines and autism, if I’m lucky, maybe I’ll be able to fit in some tips and tricks for parents and patients to judge evidence, and credibility for themselves.

Also in the pipeline: An overview of the Hannah Poling case, and a breakdown of mitochondrial disease.

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13 Comments on “Hard Conversations: Vaccines and Autism, Part 1.5”

  1. diera Says:

    I’m not quarreling with your overall point and I love this series you’re doing, but I do want to point out that there’s another reason parents (and patients in general) sometimes come to trust sources other than doctors; doctors are human too and aren’t always correct. My daughter’s pediatrician was initially quite dismissive of my suspicion (entirely based on Google U coursework, I freely admit) that my daughter had a genetic disorder. He finally gave me a referral to a specialist, but he clearly thought he was just humoring me. The specialist agreed with me, not him. Were it not for my Internet-derived knowledge and my unwillingness to be reassured by someone who wasn’t taking me seriously and didn’t know much about the condition I was worried about, my daughter wouldn’t be getting the care she needs.

    The problem is that nearly everyone has a story like that, a story of medical reassurances that something wasn’t serious when it was, or of a misdiagnosis delaying the correct treatment for a condition, or of a procedure making someone worse instead of better. Parents of kids with ASD may even have more of these experiences than the average person, if their initial worries about their children’s development aren’t addressed as well as they should be.

    I’m not slamming doctors or modern medicine here, not at all. There are several people in my family who are alive today only because incredibly dedicated medical people armed with modern knowledge and drugs saved them. My daughter has a good chance of having a normal lifespan because of amazing advances that have been made over the last couple of decades. I just wanted to make the point that sometimes, just sometimes, it’s not the patient who is the one with the misinformation, and people *know* that. I think any discussion about why people sometimes come to believe that their own opinions are worth as much as an expert’s opinion has to take into account the fact that people really remember those times (however rare they might be) that they were right and the doctor was wrong and it changes the way they look at their relationship with doctors.

  2. Landru Says:

    I think there are bad doctors, just like there are people who aren’t very good at what they do in just about every professional or avocational walk of life. And I think that a person can be a good doctor and a bad communicator–or a usually good communicator who doesn’t communicate well with YOU (the generic “you”).

    It’s tough to suggest, in an environment where not everyone has relative freedom in their health care choices (or where not everyone is similarly equipped for figuring out how best to get health care information, or for analyzing it when they get it), that we as patients bear some responsibility for getting to a place of trust with our practitioners. But that’s what I’m suggesting. And, of course, it remains possible that even a trusted doc can give us bad information.

    One place that offers excellent advice on how to talk to your doctor is the Agency for Healthcare Research and Quality (AHRQ), a Federal agency in the Department of HHS. AHRQ’s campaign for addressing this issue is at http://www.ahrq.gov/questionsaretheanswer/. It’s pretty cool. Would it tell you to ask questions that would get at your doctor not believing that you or a loved one has a genetic disorder? Prolly not. But it does a great job of addressing the generic problem.

    • diera Says:

      That’s an interesting site, and I’ll keep it bookmarked.

      I guess what I was getting at, though, is that I suspect many people can’t distinguish between a bad clinician, a good clinician who’s having a bad day, a good clinician who doesn’t happen to get the right answer on the first try or doesn’t communicate well, and Evidence-Based Medicine in capital letters. To a person who doesn’t spend his or her life steeped in this kind of thing (which I do to some extent professionally, although I’m not a doctor myself) the doctor they see for a sore throat or mysterious rash or persistent headache IS the face of medicine, and they’re going to form an opinion about the worth of the whole enterprise based on the outcome of those encounters. Inevitably some of those encounters are going to go poorly, and people are going to factor that in when they think about public policy issues like vaccinations.

      It’s not as though I have a solution or anything, but I think it should be recognized that this is a factor. If one side is coming at the problem as though it’s a failure of the general public to read and understand studies, and the other side is remembering that the doctor initially told them that their autistic child was just fine (“So why should I trust him now?”), then the two sides aren’t talking about the same things and the disconnect is never going to get resolved.

  3. czrpb Says:

    I am curious what people think about waiting and doing vaccinations later than the normal times given?

    • Dan Says:

      All that would accomplish is leaving children vulnerable to preventable infectious diseases for longer.

    • trrll Says:

      Well, it’s obviously better than not vaccinating at all. The negative from an individual standpoint is that it leaves a longer window of time in which children or vulnerable to vaccine preventable illnesses, with their long-term consequences: death, brain damage, heart damage. The negative from a social standpoint is that it means that there is a larger reservoir of vulnerable children in which a disease can propagate to create an epidemic rather than dying out.

      Of course, there is no good reason to believe that giving vaccinations later. It might quite reasonably be more dangerous. After all, many vaccine-preventable diseases are more likely to have serious consequences in an older individual, so this might well be true for a vaccine as well. Sometimes people worry about giving “too many vaccines at once.” This is not really reasonable, since children are exposed to an enormous number of antigens on a daily basis. Once again, separating the injections could just as easily add to the risk as reduce it. If there is some fixed hazard per injection (which is a lot more reasonable than per vaccine) then more injections would mean more risk.

      Remember, the standard vaccine schedule is established to have a very, very low risk of adverse effects. Depart from that, and you are basically carrying out an experiment on your own kids. You are at least as likely to increase their risk as decrease it. On the other hand, the risk is so low to begin with that even if you did increase the risk, chances are good that no harm would result.

      • czrpb Says:

        Excellent! So the request has been for studies. So, Dan & trrll, where are the studies that shows that waiting is more dangerous and how much more dangerous? Where is the study that showed the current schedule is optimal?


    • From your posts, I deem it likely that you are not actually curious about alternate vaccination schedules, but an advocate for alternate vaccination schedules.

      Such studies would be deemed unethical. We have no evidence that vacines are unsafe. We have ample evidence that delaying vaccines is unsafe. What’s the justification for studies putting children at risk to test an alternate schedule?

      Alternately, one might suggest comparing our schedule to other countries. Turns out that doesn’t work – genetics is the biggest confounder, but also the statistics differnt countries gather aren’t comprable. As I covered in my evidence post, you’d need similar populations to compare.

  4. Michael Says:

    A couple of points. First, I consider Wikipedia to be problematic for lay medical information, since there is a tendency to provide too much woo in its articles. A small percentage of Wikipedia’s medical articles are well-written and sourced, but the problem is that only an expert can tell if it is.

    Second, to diera’s comments, I think that patients (and parents of patients) have an absolute responsibility to research their situation if they feel that either their health care provider (in your case, a pediatrician) or the third-party payor (the insurance company usually) are not providing the appropriate level of care. What you did is far different than the pseudoscientific Jenny McCarthy woo–you used the internet to not find crystal healing, but to research a diagnosis. I believe that primary care physicians are often times stressed by too many patients and too little time, and it is your responsibility to make your views known. Remember, you might have been wrong, and the specialist may have told you something different. But, you have the right to ask it, and in your case, your research proved useful.

  5. B Lamb Says:

    One problem is that the results of medical research is not readily accessible to the general public, since it is published in journals that require expensive subscriptions. So what is left for the general public – news articles that often get the research wrong or is biased towards sensationalism, or anecdotes and personal experience.

    The medical community might consider that what seems obvious to them since they have access to the research is not obvious to the rest of us. It also does not help that NIH has an institute dedicated to CAM. The public doesn’t have access to the results of the NIH sponsored research (mostly negative), but just having such an institute appears to provide government support for CAM from a prestigious institution.


    • Well luckily for a variety of reasons, there is a brewing open access movement within the scientific community. Leading to some good completely open access journals.

      Additionally, I really think lay people could get a good to great start just using abstracts, which are freely available. Unfortunately, going straight to the primary literature still requires alot of background in science.

      Another good resource is the Cochrane collaboration. Among other things they produce plain language summaries of articles that are much more accessible to journalists and laypeople.

      http://www.cochrane.org/reviews/

    • Heraclides Says:

      One problem is that the results of medical research is not readily accessible to the general public, since it is published in journals that require expensive subscriptions.

      I’m not sure this would really help, as you need a lot of background to read a research paper beyond face value, and in my experience even taken at face value, too many people get the conclusions wrong.

      For example, some “anti-vaccine” commenters “cite” research papers in their arguments, but get the conclusions badly wrong. Following from this, I can’t help but think that opening up access to journals in itself won’t help that much, as it will also increase the number of people getting things wrong at the same time.

      (I wouldn’t even be surprised to find down the track people “accusing” scientists of not being clear, when they are writing for their peers, not a “lay” audience.)

      Modern society relies on expertise as a form of division of labour. It seems to me that even if you open up many more scientific journals, the “lay” public would still be relying on the same division of labour as you mention unless they taught themselves university-level science. Of course, it’s more efficient to use the expertise… that’s the whole point of division of labour.

      It’s often been commented elsewhere that better science journalism (and editors) would help, and I’m inclined to think that this is nearer to the mark. Ditto for better education. The better value in opening the journals to my mind is cheaper access to the science literature for poorer institutions, countries and independent researchers.


      • It’s often been commented elsewhere that better science journalism (and editors) would help, and I’m inclined to think that this is nearer to the mark. Ditto for better education.

        Aha! Someone’s been reading my about page. I have often decried science journalism in this country has poor at best. Infact thats perhaps the number 2 reason I’m blogging as much science/medicine as I am (number 1 being to add some more value to the Google U curricula available to parents.

        Actually you’re right about the education as well. I have no data to support this. I’m sure its out there, I just don’t have time to look it up tonight. General healthcare knowledge scales with overall education.


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