Tuesday, June 12, 2012

Healthfinder.gov: Education or indoctrination?

Ever heard of healthfinder.gov? It's a web site from the US Department of health and Human Services
...where you will find information and tools to help you and those you care about stay healthy.
Sounds like a laudable goal, right? Great! Now, help me! Here is the "help" that I found when I went to the page called "Colorectal Cancer Screening: Questions for the doctor":

What do I ask the doctor?

It helps to have questions for the doctor written down ahead of time. Print out these questions and take them to your next appointment. You may want to ask a family member or close friend to come with you to take notes.
So far so good. But here is the list that follows:
  • What puts me at risk for colorectal cancer?
  • When do I need to start getting tested?
  • How often do I need to get tested?
  • What screening test do you recommend? Why?
  • What’s involved in screening? How do I prepare?
  • Are there any dangers or side effects involved?
  • How long will it take to get the results?
  • What can I do to reduce my risk of colorectal cancer?
Note the wording: "When do I need to start getting tested?" "How often do I need to get tested?" And these "needs" come well before the "why?" In fact, the "why" never really comes. The oblique "why" about which test is recommended is too little too late. The real "why" is why, or even whether, I need to get tested in the first place. I am happy to see a question on the dangers of screening, but again it leaves plenty of room for the clinician to minimize and patronize.

The list of questions is built upon one (erroneous) assumption: Everyone is bound to perceive the risk-benefit equation of colorectal cancer screening the same way. We know this is false, and each person needs to make an individual decision based in what we know today and according to the values he/she places on the outcomes. The way the questions are written, they simply reinforce the bullying attitude of the screening bias, making those who swim against this tide feel irrational and unreasonable. But may I point out that some of us spoke out against universal mammography screening even before it became the main-stream recommendation? So perhaps there are good reasons to be more cautious with screening for everything, even colon cancer.

Science evolves, our knowledge evolves. What we think we know today will be modified tomorrow. I take a strong exception to this dogmatic and one-sided formulation of how to have a discussion about testing whose risk and benefit profile may not (and should not) elicit the same unbridled enthusiasm from everyone. So please, healthfinder.gov, rethink your "helpful" questions so as to educate, rather than indoctrinate.

Hat tip to @DCPatient for pointing me to this page  

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  1. Thank you for your very thoughtful post on healthfinder's "Questions for the Doctor" tool about colorectal cancer screening. healthfinder provides decision support regarding many different health topics, and preventive screenings is a subject that many patients have questions about. Recommendations on healthfinder come from the US Preventive Services Task Force, Bright Futures guidelines, and ACIP - all panels made up of experts in the field. The evidence for colorectal cancer screening is strong; while we support the recommendations for screening, we also think the most important decision-maker is the patient, and that it's important for patients to discuss what is/is not right for them with their doctor. Our topic on colorectal cancer screening goes into more detail about why screening is important, and the main purpose of this supplementary Questions tool is to encourage a dialogue with a doctor. You may also want to check out our tools on mammograms and prostate cancer screening, where our language encourages a personal risk/benefit analysis.

    If you’d like to follow up with us about this, please email us at healthfinder@nhic.org.

  2. Dear healthfinder Program Manager,

    Thank you fro coming over and commenting. I am aware that colorectal cancer screening is highly recommended for everyone between the ages of 50 and 75. In fact, the evidence behind some of the screening recommendations is graded to be of the highest quality and credibility. However, what the sweeping recommendations leave out is a lot of details that, without a critical approach, the patient will miss out on. The tone of your questions assumes that the patient comes to the table already convinced that the doctor has the right information for him/her, and all that needs to happen is a discussion to ease him down the path toward the recommended intervention. This is what strikes me as patronizing. Instead, I would suggest that the tone be softened. The first question any patient should as is "why?" Suggesting this as the first question makes no presumption that the patient is just going to comply given any vaguely compelling advice. This screening cannot be taken lightly, as a certain number of those screened with the FOBT will be false positives, then requiring a colonoscopy, whose rate of severe complications in a recent meta-analysis was 1/300 to 1/400. This is not trivial, and needs to be taken into account by the patient in the context of the number needed to screen to avoid 1 death from CA (over 1,000 for FOBT, about 500 for flex sig, and no idea how many for colonoscopy (no data last time I checked).

    So you see it would benefit each patient to come to the table with the attitude of "if I decide that this is right for me" not "when I am told to do it because it is right for me." You see the difference? USPSTF recommendations are meant to guide the doctors in their discussions, not to be the one-size-fit-all solution to everything.

    Thanks again.