While social media is undoubtedly making its mark on patient care as a whole, one of its greatest impacts on the cancer community has been making clinical trials easier to access than ever before. Greater access to cancer clinical trials — highly structured and scientifically rigorous experiments to test new treatments, improvements in care and scientific advancements — gives more patients the opportunity to receive novel treatments and allows researchers the opportunity to become one step closer to increasing the number of cures.
“We’re already seeing places and ways in which social media is helping to change the way in which we conduct research because of its availability, widespread use and inexpensiveness,” said Thomas George, M.D., FACP, associate director for clinical research at the UF Health Cancer Center. “I think it’s going to become more and more of a critical component of clinical research.”
In current studies, the UF Health Cancer Center is partnering with the National Cancer Institute and NRG Oncology to investigate the best ways to use social media for clinical research through a social media and patient engagement program. The program takes the scientific information that normally goes onto a clinical trial’s webpage and, with the help of patients, distills the information down into what is most important for patients to know. This information is then used in a social media campaign that directs patients and their caregivers to a patient friendly webpage.
“The whole goal is to bring the clinical trial information, awareness and participation opportunities directly to the patients where they live, which is on social media,” George said.
Aside from being a new way to recruit volunteers, social media also serves as a great messaging system, allowing researchers to push information and content to patients as a part of clinical research. Right now, because of privacy restrictions, the conversation is typically only one way, from researchers to patients, but George hopes that will change in the future.
“I think ultimately the real potential is to have the conversation be bidirectional, so you can actually have back-and-forth engagement, communication, sharing of information and real time adjustments of research,” George said.
Social media does not eliminate the boundaries of privacy when it comes to a patient’s health information. To ensure patient health information is protected, the Institutional Review Board (IRB) has strict social media engagement guidelines on aspects like how patients are approached, how the clinical trial is communicated, and what information can be shared.
The entire process of patients providing their consent to enroll into a clinical trial through social media also has to be well-vetted and pre-approved by the IRB. Patient participation must be voluntary and privacy has to be protected.
Although researchers must go through an approval process to use social media for clinical trial enrollment and participation, the benefits are worth the effort, George said.
“If five times the number of patients can be reached, in half the time, and you’re engaging with patients that normally wouldn’t have any way to participate in your research, it’s totally worth the efforts,” he said. “Advances in cancer care through research can be significantly accelerated if more patients are able to participate”.
Even in today’s highly connected world, cancer clinical trial researchers still have to overcome the difficulty of reaching underrepresented and underserved communities where internet is not as accessible. George hopes that over the next five years internet availability for these communities will be a national infrastructure priority and social media will be used even more.
“I think this has really tremendous promise for making clinical research a lot more available to more people and making the results of clinical research more relevant to more people,” George said. “By having more patients involved and more diversity in the patients who are involved, the faster we can find better treatments and the more relevant the results will be to everyone suffering from this disease.”