In part 1 of this series, I explained who I am as a thyroid patient. Here I introduce myself as the campaign’s researcher and as a thyroid patient advocate.
What kind of research do you do?
That’s a complicated question. I play several research roles in my life.
I have a day job as a full-time, tenured associate professor at the University of Calgary. I have taught communications studies, research methods, and rhetoric and professional communication since 2002. Like most research professors, I labor an average of 50-60 hours per week.
In my limited free time beyond my job as a professor and my personal responsibilities, I have been immersing myself in the past 7 decades of publications in thyroid science. My academic research skills, advanced literacy, and research library access are key assets in this pursuit.
Since January 2016, I have accumulated a database of over 1500 articles, book chapters, and other types of documents in thyroid science and thyroid therapy. My database has grown at a rate of about 5-10 articles per week.
I have two goals for my research. The first and most fundamental goal is to understand thyroid science as deeply as I can as a diligent, open-minded academic reader. The second goal is to analyze its history and rhetoric.
First of all, I inquire about the T3 hormone and everything that it affects and is affected by in the context of T4, TSH, and everything else. If you follow the T3 hormone, it will take you on a fascinating journey into all organs and systems in the body and many other diseases. I continually learn about thyroid hormone synthesis, transport, conversion, receptor activation, pituitary and hypothalamic response, and how all these factors change under different thyroid hormone therapies and within different types of thyroid disease and genetic conditions.
Secondly, the history and rhetoric of thyroid science is a strong interest of mine. This aspect of my research is naturally part of my professional research position. While I don’t have a science degree, I certainly do have the academic qualifications to take on the role of a science communication analyst.
In my analytical role, I observe how persuasion and knowledge creation occur within the field of thyroid science. I often test arguments and detect “fallacies,” which are disconnects between presumptions, claims, and the data we use to support claims. Academic fact-checking involves tracing the chain of reasoning into the citations of other articles that a researcher uses to support their arguments.
I ponder how thyroid science has progressed and regressed in many ways since T3 was discovered as a hormone in 1952. I see that over time, thyroid science has truly forgotten a lot that it used to know. Opinions towards tests and medications have shifted, and not always for good enough reasons. Comparing the current past editions of Werner and Ingbar’s Thyroid textbook, a key synthesis of thyroid science, shows this.
The more I learn, the more easily I can understand and analyze research articles to see their strengths and weaknesses. My ethic is to praise the praiseworthy and blame the blameworthy while deeply sympathizing with the researcher’s role. Making scientific knowledge by collecting and interpreting data is a valuable human endeavor and is never easy.
I have published approximately 2 posts per week on thyroidpatients.ca. In future, I plan to publish my unique insights on thyroid science in more official venues beyond our campaign’s website and social media.
Who are you as a thyroid patient advocate?
As a thyroid patient advocate, I aim to stay aware of the international thyroid therapy landscape. I must be grounded not just in my own individual experience, but also collective and “clinical” patient experience. I also believe advocacy should be firmly grounded in scientific evidence.
My online participation in various Canadian and international thyroid patient support groups in the past few years has made me aware that there are huge problems with thyroid therapy at a global scale.
I became involved in thyroid patient advocacy as I saw I was not the only one suffering from the restrictive policies and guidelines for thyroid testing and therapy, limited medical training in the area, and thyroid drug availability and pricing problems.
Each country beyond us, and each province within our country, has slightly different health care systems, different thyroid hormone pharmaceuticals, and therefore different policies and challenges.
Currently, a lot of thyroid patient advocacy and education happens at the individual level in closed and semi-private thyroid patient online support forums. These are places for mutual education, empowerment, and action.
At their very best, patient support discussion forums function like an educational “layman’s/laywoman’s clinic” (we are mostly women). Patients share stories about their symptoms and even share their laboratory test results with each other. Never forgetting the fact that we are not doctors, we build a lot of collective knowledge. We see each patient’s uniqueness, and we puzzle over how their various test results relate to their symptoms, medication types and doses, and other health conditions. Sometimes patients do little forays into research and link to articles as we try to help with a specific health challenge. Each person provides a rich case study, and we can sometimes follow an individual’s treatment journey over months or years.
Let’s ponder this for a moment.
Sometimes doctors talk to us as if they think they are the only ones who have accurate medical knowledge combined with clinical experience of many patients’ case histories.
Not all patients are medically naïve. All the patients I interact with online seem to be fully aware of the limitations of discourse in online support groups. We know that some of what is published in the popular literature on thyroid therapy online can be unscientific, superficial or misunderstood. Myths and misinformation do creep into these forums, but that’s to be expected. We all begin ignorant and we can all fall into mistaken thinking. The more experienced and educated patients often chip in to enlighten the naïve as kindly and clearly as they can.
Our doctors sometimes speak and act as if they truly believe that their formal medical training makes them holy priests who alone have access to The Science and The Evidence. It’s as if they believe they are the only people with the divine right to interpret these holy texts correctly, much like the state of Christianity before the Gutenberg Press and the Reformation.
Um, doctors, do you know we are aware of the PubMed database? Do you know university libraries also give access to articles hidden behind a paywall? Do you not realize a lot of scientific research is now accessible to all? Do you think none of us have minds as intelligent as yours? Have you had time to read and ponder the past 5 years of thyroid therapy publications in medical journals in light of your clinical experience, or do you just blindly trust and obey therapy flowcharts?
The scientific knowledge equivalent of the Christian Reformation has already happened, and you can’t turn back time. Basic science and clinical research is the ultimate source of our collective knowledge about thyroid disease and therapy. We have a right to learn and interpret this knowledge too. You can’t lock us out. We can learn how to handle these sacred knowledge-making texts, no matter how obscure they may be.
Scientific knowledge is OUR human inheritance, and this is OUR disease and therapy. Let’s inquire together so that we can advocate for improvements together.
Therefore, beyond these patient support groups, I believe there’s an important role in every country and in the international forum for collective thyroid patient advocacy and patient-led thyroid education.
Looking at the landscape of discourse on thyroid disease and therapy in Canada, I felt that our country needed, and lacked, a true public education & advocacy group run by patients. Where can thyroid patients share our hard-earned experiential evidence and our intelligent responses to medical research, policies, and practices?
Through campaigns like ours.
Our campaign fills an important gap between old-fashioned top-down medical information websites (where doctors “talk down” to the public and patients) and patient-only support groups that are not accessible to doctors or the public.
Doctors, citizens and policy-makers must learn how to listen more carefully and humbly to educated thyroid patients’ rich perspectives on their own disease and therapy.
All should hear the stories and painful struggles we share in our public comments on posts.
We are each a walking, breathing medical case study.
Every thyroid patient’s journey matters.