I got asked a fantastic question from a trial participant out there today who was worried that his clinical trial data would be sold and used without his consent. I decided to do this video and provide what I know regarding this.
The fear of someone getting a hold of your personal information is understandable. In this day and age, identity theft is on the rise, and it makes sense to be extra vigilant in regards to your personal information. Many people have this fear when it comes to clinical trials. It is important to understand that laws and regulations exist to protect your personal information when you participate in clinical trials. The only people who have direct access to your personal health info when in a study are the individuals immediately involved with your care at the research clinic. Thats it. No one else. No drug companies, no marketers, no insurance companies, nada. Study centers are responsible for de-identifying all personal info from an individual in the trial. Therefore, when pharmaceutical companies go to review the data, they don’t see your name and social security number, but they see a unique study identifying number to identify you and all the data from the study associated with you. Therefore, you can rest assured that you will not be getting junk mail or spam from anyone because of your participation in a clinical trial. Furthermore, your insurance company has no way of knowing that you participated in a clinical trial either. (Some exceptions with insurance companies do exist with cancer trials so ask your study doctor about that first).