A recent article on KevinMD, “How Jenny McCarthy became a medical thought leader” bemoaning her role in the Autism/Vaccine conversation, got me thinking. What is it about the guilds of medical and academic science that all but prohibit listening to outsiders; that sanction who can ask questions or what types of questions can be asked?
Why was a mere mortal, a mom no less, able to assume the role of the thought leader? Why not an academic or a physician? Aside from the Shakespearean truth- ‘hell hath no fury’ which doubly applies to moms protecting their young- Ms. McCarthy rose to this role precisely because she was not within the guilds of medicine or science. She was not encumbered by a particular line of research. She had no need to impress her superiors, maintain her grant funding or continue the publication mill required to succeed in academia. She was an outsider. She could ask the questions either too obvious or too controversial for any well-respected physician or academic to ask- like ‘is it really a good thing to put thimerosal in vaccines?’ And by doing so, loudly enough and long enough, she created a movement, much to the chagrin of the medical-pharmaceutical establishment.
Her story and that of other medical outsiders should serve notice to the academic and medical establishments. It’s not sufficient to hide behind one’s academic laurels or regurgitate the party line. It’s not sufficient to communicate only amongst one’s peers. The dissemination of medical information is no longer top down (see PatientsLikeMe and 23andMe). It is no longer controllable by the profession. Social media blasted that control wide open. And pledging some misguided fealty to the hegemony of a medical truth simply because the evidence to contrary is posed by an outsider says more about the intellectual poverty of the ‘experts’ than the lack of education of the patient. Keep this in mind, when you read the comments posted in response to the Jenny McCarthy article, comments made presumably by physicians.
Aside from the very real risk for obsolescence that physicians and academics face when disparaging and dismissing the concerns of their patients, by failing to communicate with their patients, by not entering the conversation in an honest and thoughtful way, they feed the very ignorance that is feared most. When physicians don’t enter the conversation, or when they simply regurgitate the party line without addressing the possibility that there is grain of validity to the question or concern posed, the void of medical leadership will be filled by others and sometimes dangerously so (chicken pox infected lollipops sold over the internet).
When we began this company, to find connections between hormones and disease, we did so knowing full well that to many of the medical guilds measuring hormones is considered unnecessary and doing so saliva is especially suspect. (This despite the fact that salivary analysis has been used in academic research for over 30 years and when controlled correctly, is far a superior matrix for certain lipid soluble analytes than blood). Think about what it means when an industry where 70% of decisions are made by consensus rather than evidence says measuring key biological variables for women’s health (building evidence) is unnecessary. It says, ‘we want you to stay ignorant of your physiology.’ That is not leadership. That’s not even particularly thoughtful. That’s a knee jerk.
The public needs physicians and academics who are willing to get in the game of public discourse.
He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.” “Listen to your patient, he is telling you the diagnosis,” William Osler.