Targeted Social Media Use Could Expand Mesothelioma Knowledge Base

Technological advances in medicine have provided many victims of malignant mesothelioma with significantly longer survival times. Though the disease remains extremely challenging to treat, improved techniques and earlier detection have combined to the point where some of those diagnosed with the rare and fatal form of cancer are able to live several years beyond the median survival rate of less than two years after diagnosis. As advocates and health care practitioners alike join forces to try to continue this trend, they have identified social media use as an additional tool with tremendous potential. They believe that targeted use of social media can not only enhance awareness of the disease and lead to earlier diagnosis, but also provide those diagnosed with the disease with greater access to the many clinical trials being conducted around the United States and the world.

Greater Awareness of Clinical Trials Can Lead to Improved Treatment

Though malignant mesothelioma is an extremely rare disease diagnosed in less than 3,500 people a year, social media use and advertising on television and radio have brought the disease out of the shadows, making a far greater percentage of the population aware of its causes, as well as its symptoms. This means that more of those who have been exposed to asbestos are aware that they are at risk, and more are seeking earlier diagnosis when symptoms arise. Combining this earlier diagnosis with the strides that oncology researchers have made has meant improved prognosis and quality of life. Clinical trials help contribute to these successes, but the larger trials study for mesothelioma are frequently done using collected data rather than live patients because the patient pool is so small to begin with.  Combining that with the fact that fewer than 5% of cancer patients in the U.S. participate in clinical trials means that the pool is likely to remain small, but social media use could change that.

Patients Seeking Answers Can Be Alerted to Clinical Trials

Mesothelioma researchers are beginning to harness the power of social media to reach out to the mesothelioma community and encourage greater participation in clinical trials. Patients who live outside of the major metropolitan areas where these trials are conducted might not hear about these trials through their physicians, but can be alerted to them via social media platforms, as well as digital notifications on the websites where they are seeking answers to questions about their diseases.

The more information about mesothelioma and its treatment is shared and communicated, the greater the chances of finding a cure. If you need information about clinical trial availability or any other resources that might be available to you, contact the Patient Advocates at today at 1-800-692-8608.

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.

Terri Heimann Oppenheimer

Terri Oppenheimer

Terri Heimann Oppenheimer is the head writer of our news blog. She graduated from the College of William and Mary with a degree in English. Terri believes that knowledge is power and she is committed to sharing news about the impact of mesothelioma, the latest research and medical breakthroughs, and victims’ stories.

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