A fundamental right we have as patients is that of health literacy, which the Department of Health and Human Services defines as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”
My Own Journey
One of my most satisfying accomplishments has been contributing to the health literacy of cancer patients in the area of clinical trials. In fact, I’m proud to say that I helped two people learn about and get enrolled in a clinical trial for patients with HR+, HER2- breast cancer.
It all started with gratitude, which I talk a lot about at WhereWeGoNow (WWGN) and in my speeches and books on cancer survivorship. (Practice Gratitude is Secret No. 3 in my book, You Can Thrive After Treatment: 10 Simple Secrets to Creating Inspired Healing, Wellness & Your Joyous Life After Cancer. Amazon associates link.)
Early on in treatment, I became overwhelmed with gratitude for the support of family, friends, other patients/survivors and the medical professionals who pulled me through the muck of cancer. Initially, all I could do was say “thank you,” over and over and over. “Thank you” became my mantra, an expression of gratitude, a prayerful reminder that I was surrounded by love and not alone.
Eventually, I wanted more than words, I needed action. That was a long time ago, and since then, multiple opportunities to give back have come my way and enriched my healing immeasurably. (Give Back is Secret No. 4 in You Can Thrive After Treatment.)
Increasing Awareness for Clinical Trials
Which brings me back to clinical trials. A few years ago, I was contacted by Fabio Gratton, chief executive of CureClick. Fabio explained that CureClick is a platform that increases awareness and speeds up recruitment for clinical trials by mobilizing people like me to spread the word about them through our social networks. There are trials available for all stages of cancer, including post-survivorship.
When I first spoke to Fabio, I didn’t know a thing about clinical trials. What struck me immediately, however, was his passion for creating real awareness.
As it now stands, one of the reasons that two-thirds of clinical trials in the United States fail to meet their original patient recruitment goals is due to a lack of awareness by patients that they exist. That’s why it was a no-brainer to become a CureClick ambassador and use Twitter, Facebook and WWGN to help “educate the public about the value of clinical research, disseminate patient-friendly information …, build awareness of specific sponsor trials, and facilitate the process for identifying and enrolling suitable participants.”
Health Literacy More Than Just Information – It Must Be Accessible, Understandable and Trusted
When it comes to health literacy, however, it’s not enough to just know that clinical trials are out there. As patients, we do a lot of research online and need information presented in plain language that is easily understood by non-medically trained people. We also need improved clinical trial registration and results disclosure, or what is now called “transparency.”
Initially, ClinicalTrials.gov was created under the Food and Drug Administration (FDA) Modernization Act (FDAMA) of 1997 to create a public registry of federally or privately funded clinical trials. In January 2018, the FDA announced a pilot program to make Clinical Study Reports containing the results of clinical studies, including adverse events, available to the public. Future clinical trials registered on ClinicalTrials.gov are to have identifying numbers so a database search for all trials concerning a specific drug can be made.
ClinicalTrials.gov is trusted as the “the most widely referenced public source for clinical trial information.” Patients, however, can find the site to be “confusing, difficult to navigate, and replete with medical language, rendering it of little use.”
In order to simplify the process, sponsors are creating dedicated websites that optimize keyword search engines, thus making online searches for relevant clinical trials easier for patients. On sponsors’ websites, information as to each clinical trial is written in non-medical jargon, so it is easily understood by lay people. You’ll also find time and eligibility requirements, restrictions and other details you need to know to make appropriate health decisions. Patients can fill out forms to start the enrollment process and, if enrolled, get results in plain language after the trial is completed. Results are also shared with researchers in scientific publications and presentations, or on ClincalTrials.gov, EU Clinical Trials Register, or on sponsors’ websites to foster scientific innovation and discovery.
At present, 95 percent of cancer patients do not participate in clinical trials. By increasing awareness through platforms such as CureClick and maximizing transparency on sponsor sites, the hope is that we can better help patients navigate the research necessary to find out about and enroll in clinical trials.
As patients, we are entitled to health literacy. When it comes to clinical trials, health literacy benefits patients by empowering healthcare decision-making and fostering scientific innovation and discovery. Clinical trials “are the key to making progress against cancer” and health literacy is the key to opening the door to clinical trials.
This article originally appeared on Where We Go Now.
About the Author
More Content by Debbie Woodbury