Demystifying Clinical Trials

Participating in clinical trials and research is a way to engage in social goodness. I know how hard it is to come up with funds to access off label treatments or even mainstream treatments, leaving many with a lack of proper and timely care.

The NIH has conducted studies on the importance of awareness of clinical trials to show patients that they have power! Awareness of clinical trial participation helps by changing attitudes toward clinical trials, enrollment, and the benefits of participation. The Harris Interactive Survey conducted a few years ago showed that 85% of patients were either unaware or unsure that participation in a clinical trial was an option at the time of diagnosis and that 75% of these patients said they would have been willing to enroll had they known it was possible. Having patients understand that clinical trials are available and cover a large variety of diseases both well known and rare. Participants of clinical trials can advance the prevention, diagnosis, and treatment of diseases and there are such a variety of trials that there is something for everyone.

I encourage the readers of this article to consider participation in a clinical trial after reviewing and talking with your own healthcare team to get their opinion and suggestions. Having the resources and information to talk over with your providers can help you decide if participation is right for you. Making an informed decision is very important before participation. Also understanding what the intended outcome of the trial, exclusions, and time to participate is important. Another area I have realized is important is knowing if you will have access to the treatment after the trial ends, prior to it being FDA approved and released to the general population for purchase.

The stigma of “I don’t want to be a guinea pig” is one that I had to consider. Having a great understanding of the information, process, and how the results are shared, who is included in the trial has helped me overcome my hesitations to participating in clinical trials. For example, I can drop out of a trial if I decide that it is not working or right for me any longer. I also have found that some trials pay me for my time, or even transportation to the facility and others let me participate from home through the internet. There are so many different kinds of trials, I just have to research what would be best for me and suggest you do the same when considering the possibility of participating for yourself.

If you want to learn more check out the clinical trial check out this Clinical Trial Series by the International Pain Foundation and Clara Health that aired last year. Whether you are newly diagnosed or have been living with a condition for 30 years, there is a trial for you. One of the places that I suggest you look for trials besides the NIH website is www.clarahealth.com.

By Ken Taylor