A common type of infographic shared on thyroid patient online support groups is an image with text that provides a comprehensive list of thyroid tests.
Many of these thyroid-test-list infographics are in circulation. They reappear over and over again as patients keep libraries of favorite infographics to share with other patients. They go viral from forum to forum.
I’ll use the word “meme” interchangeably with “infographic,” because they convey attitudes, not just information.
Reflecting on these memes, I believe they are compelling and useful, but they also have several drawbacks that are now biting us all in the butt.
With the help of fellow patients in our association and its support group, we’re developing our own series of thyroid testing infographics.
This series of four posts walks through some of the testing memes we’ve developed.
But first, I start with this brief essay about the problem we’re trying to solve, and how we are trying to solve it.
Memes with lists of tests have contributed to an era of overtesting, which led to our current era of anti-testing campaigns and bullying.
I propose that we move forward with evidence-based infographic memes on thyroid testing that educate each others and indirectly, our doctors, through our public media. These infographics complement and build on the “attitude memes” and “activist memes” that we share to enrich our public and private discussion.
Overtesting vs. Anti-testing
Of course we can be desperate for test results at times. We want to know what is going on because we so often feel horrible. A mere list of tests can foster a willy-nilly approach to test-requesting.
Some graphics are like a shopping list, making it seem like all tests are necessary at all times, and that our doctors should order all of them over and over again.
This machine-gun test-requesting approach has inspired a trend of chronic overtesting. We thyroid patients and doctors are now getting pushback against years of meme-inspired overtesting. Someone was paying for it, and we are now paying for it by being locked out of some of our primary tests.
We are now seeing even our doctors’ most rational and necessary thyroid test orders cancelled by laboratories. Rigid flowcharts dictate narrow pathways of testing, utterly blind to the complexities of thyroid diseases and therapies.
The doctor behavior-modification experts have powered up their stance. The stick is more effective than the carrot. The stonewall and the shame game are more effective at test-cutting than the medical professional development workshop.
Our doctors are not only being shamed and threatened, but simply overruled on their test-ordering choices. Impersonal machinery is steamrolling over clinical decision making.
The bullying circle
Like the parent who beats his son, who then beats his little sister, who then beats her dog, many doctors are passing the shame game of test-shaming and evidence-denial down to the patients.
Doctors are being bullied, and it’s turning doctors into bullies of the patients they are supposed to heal.
In our patient support forums, we’re increasingly hearing reports of traumatized patients who have been given demeaning, harsh tongue-lashings by doctors during their appointments.
Asking for a certain type of thyroid test is like trying to light a candle in the dark, only to discover you’ve lit a stick of dynamite.
Dan Olweus has designed an excellent PDF infographic adaptation of “the bullying circle” describing this phenomenon. Bullying involves not only bullies and victims, but also henchmen, active supporters, passive supporters, disengaged onlookers, and potential witnesses.
Speaking back to the bullies is the “resister, defender, and witness” who actively resists bullying, stands up to the bully, and speaks out against bullying. That’s what I’m doing.
The ultimate bullies at the top of the cycle are the policymakers. These consist of various endocrinologists, physicians, healthcare administrators and biochemists who translate narrow-minded consensus-driven therapy guidelines into local health care systems’ testing and therapy policies. They develop narrow testing guidelines and flowcharts.
For every policy, there is a marketing campaign with truckloads of sugar to help the medicine (or poison) go down. They promote their test-cancellation campaigns through policy think tank and marketing initiatives like Choosing Wisely Canada, a national branch of an international organization. These happily assisting health care programs for a fee by putting a shiny smiling face on test-cutting, shaming and policing systems. Ours is funded by our Canadian Medical Association and provincial health care systems.
What is the role of publishing physicians who domineer over both doctors and patients through journal articles that brazenly blame us for being “barriers” to our own efficient therapy when we ask for certain types of tests? These are Henchmen. They “take an active part” in the bullying, but they do not plan or start the bullying.
The reviewers and editors of the journal that published this article are likely the “active supporters,” who “cheer the bully on and seek social or material gain” from the bullying activity.
Our tormenters are also the tormented.
This anti-testing, anti-evidence campaign against our doctors’ professional and scientific integrity and ultimately our critical health data, has got to stop.
Doctors are pressured by their professional associations’ dogma and their desire to have a fulfilling medical career. Good doctors feel a desire to heal and protect their patients, but where’s the reward for pushing back? Many doctors appear to be muzzled and prevented from doing anything about it, and many blindly believe the dogma.
Too many doctors and medical administrators have abdicated science and reason, so we patients need to do some of the reasoning for them.
Someone’s got to do it, and I believe patients can play a productive role.
Ultimately we can’t just vent and roll our eyes behind our doctors’ backs, that’s only so productive. If we want to improve the system, we must humbly, patiently, and compassionately teach what we know.
As patients, let’s proclaim a better way, both publicly and privately.
An infographic campaign
Those of us who have learned a lot from science and clinical experience in thyroid patient support forums have a lot of things we can share.
Let’s develop and share new sets of infographics.
Evidence-based memes that reason through the why and wherefore.
Our infographics may be most useful in private forums, but ultimately they aren’t limited in audience. Just as children’s movies also speak to the parents watching with them, we also communicate with our doctors who are members of the public.
These infographics could not only be ways to educate each other, but may also inspire in our medical associations a more rational, scientific, and effective approach to thyroid testing.
We can’t form policy. But we can inform policymakers in the public sphere who apparently aren’t reading the best thyroid science. We can’t change how medical school teaches about thyroid disease (or what it omits). But we can publicly inform those who teach and learn in medical school.
Why cite science on a meme?
I try to cite one or two sources per meme, or borrow or adapt an image or graph from a scientific article. One citation is the mere tip of an iceberg, and it’s never perfect, but it’s better than none.
Thyroid science, despite its complexity, is the only firm common ground between patients and doctors. Neither side of our thyroid community seems to be referring to the roots of science often enough and is straying into narrow opinions.
Therefore, I’ve borrowed, edited and cited graphs, evidence, and principles from medical journal articles.
The citation of a thyroid scientific article has to travel along with the meme because our only authority, whether we are clinicians or patients, is based on good research plus clinical experience. We all have access to clinical experience, but few patients and doctors have skills or time browse PubMed to inquire more deeply or refine hypotheses. An evidence-based memes might make the crucial connection between clinical experience and scientific evidence.
A citation might also be an encouragement to look into some of the basis of a meme now and then.
Why use images of people, and mostly women?
Too many infographics are faceless and impersonal.
I believe that a disease that must be managed by numbers desperately needs human faces to represent those numbers. So much of our vital data has to come through lab tests that measure our invisible hormones and antibodies.
Ultimately, it’s about people, not just numbers.
Each meme can only have one or two faces. Across the full set, I’ll do my best to mix old and young, various ethnicities, body types, postures, and facial expressions.
It’s a fact that most thyroid patients are biologically female, so most of the people look female, so the majority of us can identify with them.
Brevity and multiplicity
Each meme or infographic can only say so much.
Instead of piling everything into a single meme, we have to break up the communication into little chunks.
The best meme is one whose title and main headings can be read when embedded in a comment or reply under a Facebook post while using a smartphone. It’s a simple image like a photo.
The best ones aren’t just words but shapes like circles, arrows, symbols, and people. An infographic should be like a visual-verbal puzzle that welcomes you into a journey. You can piece together its components bit by bit to decode it.
It’s got some very big text, some medium sized text, a bit of fine print that can only be read if clicking to view full screen. It has some empty “white space” of simple background color. A healthy amount of white space is the hardest to maintain on a complex topic.
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