Every year the American Society of Clinical Oncology (ASCO) brings together nearly 40,000 oncology professionals from around the world to discuss new treatments and innovations that will, hopefully someday soon, improve care for the more than 15 million Americans currently battling cancer.1
In recent years, advances in immunotherapy, precision medicine and insightful use of “big data” have dominated discussions. This year was no exception, but there was also something tangibly different that permeated the conference. Most meetings I attended and conversations I had focused on the urgent need to increase participation in clinical trials.
As patient advocates, many of us patients and care partners ourselves, we know that participation in clinical trials is absolutely necessary for innovation. Nearly every advance in cancer care available today was first evaluated in a clinical trial. But even as we know this to be true, the fact remains that only 3% to 6% percent of cancer patients who are eligible for clinical trials participate.2
Reasons why so few patients participate in trials are well documented. Fear of receiving a placebo, concern over side effects, perception of being a “guinea pig”, and other fears are quite often so deeply engrained that they can be difficult to overcome. In addition to those fears, patients face the uncertainty of out-of-pocket costs and inconvenient travel to trial locations among other practical concerns.
So, what can we as advocates do to make a difference?
- Be part of the solution. We need to recognize that each of us has a critical role to play in dispelling widely held misconceptions about clinical trials. With the help of Astellas and other like-minded sponsors, my organization, Patient Empowerment Network, launched a new program this year called Clinical Trial MythBusters to help build a basic understanding of trials and debunk common myths.
- Education is the answer. We need to work together to enhance basic science and health literacy to enable shared decision-making that includes clinical trials as a potential solution. The Cancer Support Community created tools that every patient should have access to: Open to Options and Let’s Talk Treatment Options.
- Provide assistance. Organizations like Lazarex Cancer Foundation and Family Reach provide patient access to clinical trials and a financial lifeline for cancer patients and their families.
- Encourage minority participation. Diversity in clinical trials is essential to help researchers improve treatments for diseases that disproportionately affect individual populations and ensure the safety and effectiveness of new therapies for everyone.
- The sum of the whole is greater than the parts. We need to work together and be active participants in pan-advocacy initiatives, like the Coalition for Clinical Trials Awareness. Together, we really can make a difference.
- Lastly, and perhaps most importantly, we all need to acknowledge and thank the courage it takes to participate in a trial. There was one slide amongst the thousands I saw at ASCO that gave me reason to hope. This is the first time I’ve seen patients and their families thanked for their participation in a clinical trial and I hope it isn’t the last.
- Cancer Facts & Figures 2017. American Cancer Society. Accessed June 7, 2017. Available at: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2017/cancer-facts-and-figures-2017.pdf
- Cancer Research Institute 2017. Clinical Trials. Available at: https://www.cancerresearch.org/patients/clinical-trials