Breaking Through Clinical Trials with Patient Power By Barby Ingle
Having been through a search for better treatments through research started for me with just trying to find a proper diagnosis. It took nearly 3 years and 43 providers to get that diagnosis. Some of the treatment options I went through over the past 20+ years of living with chronic diseases have developed into great strides for other patients as well as myself. Part of participating in the clinical trials, big and small, that I have over the years showed me that as a patient, I have power. We have the power to choose as a personal decision which trials to participate in and what we are comfortable with as a chronic patient. We have the power to ask questions and get the information about clinical trials that we need to feel comfortable. We have the power to quit the trial if it becomes detrimental to our underlying condition.
Clinical trials are run under strict rules and standards which are monitored by the NIH and FDA. The trials are carefully constructed into the fastest and safest way to find treatments that work in the patient populations that the intended outcome of the treatment will work best on. When a patient participates in a clinical trial they are playing an active role in their own healthcare. At the same time, they are gaining access to important research treatments before the treatment is widely available. Best of all, we are helping others with the same disease by contributing to both current and future medical research.
I chose to share about my experience with clinical trials because of the disparities and the importance of getting access to better options, proper care and in a timely manner. It is so important for clinical trials to better mirror patients who will be the end user. This is especially true on diagnosis that appear different minority populations more often. There is a lot of disparity in enrollment of minority patient populations in clinical trials. This can come from mistrust from patients who have been underserved & undertreated throughout the typical healthcare system. There is also a disparity in recruitment of minority patients. I think because of a lack of access to proper/timely care & lack of transparency in past, it’s harder for new trials coordinators recruit. If researchers don’t develop a diverse pool of research patients, health disparities may persist unnecessarily.
Having new treatment options is one of the things I like most about breakthrough research. Success in attempts to resolve a health challenge is when a scientific breakthrough creates originality in treatments. One of the clinical trial options I have done has the hallmarks of breakthrough research. I started testing for an oral orthotic device back in 2012. Not only did it help me with lowering levels of chronic pain, it helped lower my neuro-inflammation levels (measured by fMRI) and in return I surprisingly benefited with bringing back eye sight in my right eye that I had lost after my auto accident in 2002. The traditional doctors I saw had given up. They said I would have vision loss in my eye for life. The trial of the OO (as I lovingly call it) showed me and providers that its use lowers neuro-inflammation significantly. It was enough for me to recover my eye sight. For me and others this device has helped with speech, ticks, memory, balance and coordination. The results from the study are now being published into medical journals and an upcoming book.
If you are considering participating in a clinical trial be sure to ask enough questions prior to getting involved as a participant. They last different lengths of time, some require travel, some involve placebo versions. Make sure you know what you are getting into. If you are interested in doing a clinical trial a great place to start is www.clarahealth.com. People who take part in trials are vital to the progression of treatment. Participating in a trial can give you the opportunity be an engaged patient who is active in your own health care and gain a greater understanding while possibly giving you a new option that can give you (and others) better daily living.