Cancer kills more people in the United States than accidents, stroke, Alzheimer’s and diabetes combined. In 2017, despite spending 147 billion U.S. healthcare dollars on cancer care, 600,000 people died from cancer and 1.7 million new people were diagnosed with cancer. But the news is not all grim: in all, 2.6 million lives were saved from cancer over the past 25 years, due to a consistent yearly decrease in cancer deaths.
The improvement in cancer mortality- i.e. how likely are you to die from your newly diagnosed cancer- is the direct result of advances in cancer detection and cancer care. Clinical trials fuel this progress. At their core, clinical trials seek to improve on the current accepted treatment for a given cancer. By enrolling patients into a clinical trial, researchers can offer investigational or unproven treatment and measure its success, or failure, in an unbiased way.
Patients with cancer are often motivated and engaged with their physicians and treatment decisions. The majority of patients seek support and resources online. Unfortunately, fewer than 5% of patients with cancer in the United States participate in clinical trials. Why so few? Part of the reason is fear of the unknown. In a survey conducted by Memorial Sloan Kettering Cancer Center in New York only 35% of patients responded they were “likely” to participate in a clinical trial, due to concerns about side effects, costs, location, and skepticism about receiving a placebo or unproven treatment. Yet, the actual percentage of patients who are enrolled in the U.S. is even lower, at only 5%. The solution in increasing that rate may lie in harnessing the inherent power of social media.
Social media should be used to educate the public about the goal of clinical trials and to encourage more participation. Physicians need to create a visible presence online to dispel the common misbelief that clinical trials are only appropriate for patients who are dying, or for those left without any other treatments options.
A major deterrent to clinical trial enrollment is finding a trial you are eligible for. Social media can help recruit patients by raising awareness of open trials. Awareness is vital because the more quickly a trial is filled with patients, the sooner we can obtain its results. Trials that don’t accrue enough patients ultimately close, which means both wasted research dollars, and unanswered clinical trial questions. If we can spread awareness of open clinical trials on social media, more patients can enroll, which not only saves money, but aids the progress against cancer. As soon as we have an answer to one trial, researchers can move onto the next.
This trend has been slow to start. Researchers at the University of Southern California are investigating the utility of using Twitter to recruit patients to their institution’s clinical trials. Some patients contact physicians directly via social media, including Dr. Cathy Eng, an oncologist at M.D. Anderson Cancer Center, who routinely receives messages via Twitter from patients interested in enrolling in a trial. She has also recently joined the Colontown Facebook group, which is an online community for patients with colorectal cancer. In this patient forum, Dr. Eng highlights clinical trials for patients with colorectal cancer and directly answers questions posed to her about the trials. Dr. Suzanne Cole, an oncologist at UT Southwestern Medical Center, has had patients who initially searched the National Cancer Institute’s database of open clinical trials, who then contacted her study coordinator to enroll.
Online communities such as the #LCSM (Lung Cancer Social Media) Twitter group and the #BCSM (Breast Cancer Social Media) Twitter group both host weekly Twitter-based chats to educate patients about lung cancer. These online communities were started by and are maintained by a cooperative of patients and physicians, and have had a strong impact facilitating patient advocacy and education, including information about clinical trials.
NRG Oncology is an adult cancer clinical trials organization sponsored by the National Cancer Institute. It represents the combined efforts and members of the 3 founding cancer clinical trials organizations in the U.S.: the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG), and the Gynecologic Oncology Group (GOG). I recently participated in their Social Media Working Group to help design their pilot program utilizing social media to share information about open clinical trials with patients.
Dr. Thomas George, an oncologist at the University of Florida who headed this mission, said “NRG Oncology recognizes the need to engage patients where they are – which today, often includes social media. To that end, the NRG Communications Committee, with valuable input from patient advocates, is developing a comprehensive pilot program of social media-based patient engagement for clinical trial awareness and participation.” NRG also prioritizes a patient-centered approach when designing their trials, and works with patient advocates and representatives for all their programs.
This movement to expand direct patient-advertising is encouraging, but more needs to be done. Social media can offer more than just information about trials because of its ability to bring researchers and patients together remotely. Currently, many clinical trials are available only at large cancer hospitals because they have the resources to run, open, and maintain trials. FDA regulations require tremendous oversight at every aspect of trial implementation, which means that small hospitals often can’t afford to enroll patients on trials. If a patient wants to enroll onto a trial, they may be required to discontinue their care at their local hospital. This is a major deterrent for patients to enroll on trials. What if a patient in rural Idaho could be enrolled onto a trial at a major cancer center in NJ? Social media should be used to recreate the framework of trial design, starting with making it easier for patients to enroll remotely. Doing so would ease the burden for physicians and patients to recommend participation in clinical trials, especially at community hospitals and in underserved areas, who don’t have the resources to maintain their own trials.
Enrolling patients onto trials more quickly would free up research dollars to run more trials, such as patient-centered trials uniquely designed by a social media community. This untapped source of volunteers from across the U.S. would be able to participate in trials in unprecedented numbers. Researchers would have open channels of communication with large numbers of patients, who they could pose questions directly to, such as “what kind of trials are you willing to participate in?”
There are real barriers to this proposed social-media driven model. Patient privacy must be protected, which means implementing strict protocols for sharing confidential patient information. Moreover, the language used to advertise clinical trials is strictly regulated: the future of social media driven clinical trials cannot include pitches like “Come join our trial to save your life!” Researchers need to obtain informed consent from each trial participant, which is more difficult when done remotely. And, monitoring the day-to-day running of the trial may be cumbersome, due to different physicians’ treatment style, monitoring of side effects, and determination of treatment success or failure. While the above obstacles will necessitate careful attention, the time has some to utilize social media for improving cancer care. Let’s investigate new ways to engage patients, not simply funnel them into our current inadequate paradigm.
The sooner we embrace it, the more lives we can potentially save.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.