CanSearcher: Creating a ‘Google Map’ of Cancer Clinical Trials
Digital maps have revolutionized the art of traveling and tourism. There used to be a time when it was absolutely necessary to have local tour guides when visiting a new place. This was a necessity for anyone looking to maximize their stay when visiting a city in order not to miss out on the goodies of the best restaurants, parks, museums, and other attractions as the case may be. While human tour guides are still relevant and super helpful, “Google Maps” and other digital maps have become quite ubiquitous and a must-have, not only for traveling but also for daily commutes for the average human. Enabled by the use of digital maps, we can now easily search and get recommendations of the closest attraction sites including step-by-step directions on how to get there.
Clinical trials are very important in the discovery and development of new drugs to tackle cancer. Because of genetic variation between different races and ethnic groups, a drug might not be efficacious or even lead to severe side effects in a particular population or racial group if the group was excluded during clinical trials for the drug. For this reason, participation in cancer clinical trials needs to be highly inclusive and diverse. Some of the major reasons why underrepresented groups especially African Americans do not participate in cancer clinical trials is due to a lack of information about these trials; how to get to the clinical trial location; and also whether there are any close to them. Many do not participate due to how distant these trial sites are away from them and also a lack of disposable income to travel that far. Digital maps are readily available on our mobile devices and have made life so easy for us. The more I thought about the challenges associated with inclusive participation in cancer clinical trials, the more I realized how this technology can in fact be highly beneficial in healthcare, particularly in advancing cancer research and care. Thus, I propose a mobile application named CanSearcher to serve as a digital atlas capable of easing the burden of finding near and distant cancer clinical trial sites for patients, caregivers, and physicians.
This project represents the perfect culmination of several little steps and efforts that I have put forward in hopes of bridging the gap in health disparities and inequities through the course of my academic and professional journey. My first encounter with recognizing and addressing health disparities was during my internship with one of the leading pharmaceutical companies in the world. I had been selected for a Global Regulatory Affairs/ Drug Discovery role. Prior to that, I had published a paper on how different populations of people respond differently to medications based on their genetic differences. The study had also shown that clinical trial findings in a majorly Caucasian population for instance would not exactly be fitting for drug development in a black population. Hence, I became interested in finding available clinical trials in African countries for diseases that predominantly affected Africans. Sadly, that was not the case as many of the diseases of concern to Africans did not have ongoing local clinical trials. I was greatly disturbed by this and saw an opportunity to reach out to department heads and discuss workable solutions for addressing this. Afterward, I decided to pursue a Ph.D. in Medicinal Chemistry at the University of Michigan to pursue research that aligns with my passion and build capacity for quality drug development research in Africa in order to address diseases that particularly affect Africans.
I was just at the beginning of my first year in the program when I saw the opportunity to apply for this challenge. This felt like the perfect opportunity for me to explore solutions to questions that have always fascinated me. Based on my background and encounters with a lack of diversity and inclusion of underrepresented groups in clinical trials, I decided to think through and research what was the most effective way to tackle this issue. My goal for this project is to devise a solution that would put the power in the hands of patients and their caregivers and allow underrepresented groups to take charge of their health by bypassing systems that made it difficult to participate and benefit from clinical trials. CanSearcher was thus conceived for the sole purpose of achieving equity in cancer care.
Why is it so important and helpful for cancer patients especially underrepresented groups to participate in cancer clinical trials? You might be wondering if it is just like every other clinical trial. Well, the truth is that it is not. Cancer clinical trials can benefit not just the trial conductors and researchers trying to come up with a new drug, but also the patients themselves. To start with, your first concern might be about the use of placebos like in other clinical trials. Nobody wants to see their loved that have been signed up for a cancer clinical trial get worse and worse over time because they were placed on no medications at all through the course of the trial. However, the good news is you don’t have to worry about being placed on a sugar pill in a cancer clinical trial. Placebos in cancer clinical trials are usually still the standard effective treatment that people who are not in a clinical trial would receive. Many people will only get access to some of these new and innovative medications for managing cancer by participating in a clinical trial. While being treated with these groundbreaking and life-changing medications, you also do not have to worry about getting a bill you could never afford. These would normally have been paid for by the clinical trial research team. These reasons and more are why cancer patients should have an equal opportunity to participate in cancer clinical trials.
Black people once diagnosed with cancer do not survive cancer as well as other population groups. Unfortunately, despite it being proven that participation in cancer clinical trials could improve survival by up to 5 years, black people are among the least represented population groups in cancer clinical trials. There are several reasons why minority groups do not participate in clinical trials. One of such which has proven really difficult to surmount is the issue of lack of trust in recommenders and the healthcare system at large. Fear of being recommended for a trial to be used as “lab rats” has prevented many Black people and minority groups from participating in clinical trials. This fear is not unfounded due to the dark history surrounding the exploitation of minority groups, especially black people in clinical trials. It is not certain that just one strategy or tool would be sufficient to completely overcome the obstacles facing the participation of black people in clinical trials. However, I believe a tool such as CanSearcher can help to remove the medical “middleman” and put power in the hands of the patients. With this tool, patients can search and find useful information for themselves.
The process of working on this project has brought me in contact with the Sisters Network Inc. (SNI), a nonprofit organization devoted to supporting African American women living with breast cancer. I am very grateful for my conversations with Ms. Tamara Myles, the President of SNI Detroit Chapter, who alluded to the challenges of getting African American women to participate in breast cancer clinical trials. Having come this close to understanding the lived experiences of cancer warriors, I genuinely hope that a tool like CanSearcher will be a step in the direction of improved and equitable healthcare for African Americans and other minority groups in Michigan and the world at large.
