Abstract

Junk scientists and unethical healthcare providers often tell the public that systematic reviewers reject real research because of bias or that universities and the FDA are paid off by the pharmaceutical industry. I was snared in this trap during my role in a spinal injury foundation after sustaining significant brain and spine injuries. I was too naïve and damaged to understand that not all doctors are ethical or that the role of the FDA is in protecting public health. As my brain started to recover I began attending classes at the Open University and I found the world of ethics, research methods and cell biology. Soon my days at the spinal organization were numbered as I pointed out errors in the protocols and discrepancies in what the participants should know. I shared that vulnerable persons need to be informed they are participants and not patients and that it was unethical to charge patients for experimental research or use them as shields against the recommendations of the FDA. The organization battled the FDA who won a permanent injunction against them. I was dismissed long before this but felt like I had blood on my hands. I decided I would become an informed healthcare provider and I proceeded to learn Evidence-Based Healthcare at the University of Oxford where I completed the Masters and went on to become a Doctor of Philosophy student to bring evidence-based healthcare and public led trials to the masses. This is my story.

Keywords: Public-led trials; fecal implants; citizen health research; public engagement; evidence–based healthcare