About This Website: In My Own Words
In 2000, I launched this website as my author and patient advocacy website, which originally had many pages of disease-specific health content developed from my medically approved materials. When we first launched, one site visit could last as long as 9 hours, if the browser surfed all our links and content. As the internet began to grow, I began to see an ethical problem with many of the health advocacy sites. They were becoming sources of more health misinformation for browsers and patients than accurate information. I worried that rather than improve decision-making, they created more barriers to decision-making. In some areas of health where I was very active (such as thyroid health), websites began to reflect completely upside-down logic. Clinical practice guidelines from medical experts were perceived as “not credible” because of conspiracy theories perpetuated by the “angry patient” rage that began to emerge. Fueling this growing patient anger and frustration were terrible political problems with healthcare access and resources. With more orphan diseases, there were not enough knowledgeable doctors to go around, creating a community of the misdiagnosed/mistreated patient. Blogger-based websites were magnates for this community, which shared and commiserated.

In many cases, very knowledgeable, but overstretched doctors were not counseling patients properly about their options. In either case, patients began to go to the internet in droves for information and community support. They shared their stories of misdiagnosis or being ignored. Meanwhile patient-recommended treatments that ranged from insane to untested, were perceived as more credible in many health arenas because of patient distrust of another growing problem: the influence of industry in medicine. Many patient-generated sites began to reflect polarized views, personally motivated agendas, and doctor-bashing content. Conspiracy theories grew. It was difficult to sort through narrative or editorializing from “fact”. As the term “blogger” emerged, health sites essentially transformed into blogger-hosted health sites that offered chat rooms and forums. Some of these sites serve to exploit the anger and rage felt by many patients. I began to grow very uncomfortable in this portal health site community, even though I had professional relationships with some of the bloggers. I essentially lived in two worlds: academia (specifically, my field is clinical ethics and socio-ethics) and consumer health.

The bridge between these worlds is patient decision-making and informed consent. Genuine informed consent cannot take place if a patient is being misinformed or not informed. The internet fosters both accurate and inaccurate content, but creates a “blind-leading-the-blind” social microcosm, depending on who you are. I began to present to the academic medical community my ethical concerns around patient advocacy in 2003. In some of my more recent books (e.g. The Complete Thyroid Book, 2005), I’ve tried to address the enormous problem of misinformation by devoting specific chapters to it. In 2006, I began to publish in academic forums about these issues. I decided that if I “wasn’t part of the solution, I was just part of the problem” (to coin the Sixties adage). We did a complete content overhaul of this website and began to remove all health content other than approved links and links to my own books. We created new content rules for the site, and I recognized that what was truly needed was a patient health site that openly exposed the problems of misinformation by providing real tools to patients in plain language about navigation and critical thinking skills. Without open dialogue about this issue, it cannot be corrected. That is how we got here!