Patients Have Power in Clinical Trials

In Breast Cancer, Recent Posts by Barbara Jacoby

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This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.

“Hopefully, this helps to empower patients even further with regard to knowledge about and participation in clinical trials and that it creates many more opportunities for meaningful conversations between patients and oncologists that will result in better treatment outcomes for those in the world of cancer both now and in the future.”Barbara Jacoby

Three years ago, I received an inquiry from a young lady who wanted to know if there was anything that I might know or be able to do to help her find a clinical trial that was being conducted for her particular type of breast cancer. It seemed that she had recently been diagnosed with advanced breast cancer and wanted to explore the possibility of an affiliation with some research opportunity that would help her and perhaps others as well. So, I blindly researched some of the top organizations that provide such registries, sent the list to her to discuss with her oncologist and went merrily on my way.

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But, shortly thereafter, she again contacted me after her doctor’s appointment with the news that her doctor’s response was that she had already looked before the appointment and that there wasn’t any clinical trial being done that included this person’s type of cancer and there was nothing further that could be done. Her oncologist never even looked at the information that was presented to her by the patient. And what came flooding back to mind was the memories of a number of other patients from the past who had been dismissed by their oncologist with the words that there was nothing else that they could do followed by sending their patients out the door with no hope. So I decided to see what I might be able to do to help.

Taking the information that I had found for the various organizations who carried lists of clinical trials that were being conducted by them, I started searching and it was in very short order that I discovered that I was in over my head. I couldn’t begin to understand the guidelines that I found for each trial so I gave up on that approach and moved on to reaching out to a contact that I had at a pharmaceutical company who I had met at a seminar and outlined my situation for her. After much discussion and back and forth communications, she suggested that we might want to contact the pharma company that was the creator of a current medication that the patient was taking to see if they might be able to find a matching clinical trial for her needs. Since she was taking two different medications, I researched some contacts for her at both Companies in the hope that she might find some guidance there.

I don’t know what the outcome was for her with regard to these connections but this matter continued to weigh heavily on my mind. But as I researched the articles for my “In the News” daily segment for my website, it now was with an extra eye on what was occurring within the clinical trials world that I might be able to share so that others would not only know about this work but also might be able to find something that would be a starting point for discussions with their own oncologists about potential clinical trials participation. And the more that I learned about how many clinical trials were being conducted and the fact that so many of them were woefully lacking in participants, particularly in covering the spectrum of patients of diverse ages, sexes, ethnicities, etc., the more it became important to me to find a way to share what information I was finding.

Therefore, I decided to create a new feature called “Clinical Trials” on my Let Life Happen website that operates in the same way as my “In the News” segment where I daily post the research that I find that is specific to this category and share it out in the same way on social media. It is my hope that this “Clinical Trials” feature will not only be of assistance to patients who are seeking help in this area but also to medical professionals who have such limited time and resources of their own when it comes to finding answers for their patients. Additionally, I also invited articles and press releases from those companies, organizations, universities, etc. who wish to share info on my site about the clinical trials that they are beginning or participating in at any level or that have had successful outcomes so that I may share this information with a wider audience.

As the work being done now has been greatly expanded to include clinical trials for treatments for early-stage breast cancer and not only for treatments related to advanced breast cancer, it is even more important to me to share this information. And as everyone is most often looking for information on the Internet and/or through social media, it has become even more important for me to curate information to post here from not only the emails that I receive but from all of the news feeds that I receive.  Hopefully, this helps to empower patients even further with regard to knowledge about and participation in clinical trials and that it creates many more opportunities for meaningful conversations between patients and oncologists that will result in better treatment outcomes for those in the world of cancer both now and in the future.