- The National Brain Tumor Society (NBTS) has launched a brain tumor clinical trial finder to help boost patient participation in treatment development.
Brain tumor clinical trials have seen limited patient engagement in recent years, likely because patients do not know about these trials and cannot access information about clinical trials online.
There are limited resources to help patients find trial treatments, and the online clinical trial finders that do exist are not navigable and make it difficult for patients to find which trial could be right for them.
Michael Wenger, a brain tumor survivor, developed the NBTS Clinical Trial Finder. Wenger worked to make the tool usable with a patient-centered interface that allows patients to browse all clinical trials or search for specific ones.
For Wenger, the NBTS Clinical Trial Finder was about empowering patients to be more active in their treatment decisions.
“I believe that greater awareness of available clinical trials can empower individual patients, as well as the entire brain tumor community, to get more involved in medical research and their own treatment planning,” Wenger said in a statement.
Additionally, Wenger hopes the Clinical Trial Finder will help drive patient treatment access by presenting brain tumor patients with various experimental treatment options.
“Ultimately, I hope that this will lead to more treatment options in the future and that the NBTS Clinical Trial Finder encourages patients like me to consider, and engage with, clinical research from the time of diagnosis and beyond,” he explained.
Limited patient participation in clinical trials slows drug development, say NBTS officials. When too few patients engage in clinical trials, researchers and developers cannot glean the necessary information to create and approve the drug, keeping these treatments from reaching even more patients.
“Clinical trials are not only a crucial step in the process of bringing a new medicine to market, but are also among the best vehicles for patients with difficult-to-treat diseases to receive earliest access to groundbreaking potential new therapies,” said NBTS CEO David F. Arons, JD.
“We hope the new NBTS Clinical Trial Finder will be a starting point to helping patients who are unaware of the options that exist for them, in the form of clinical trials, to have an easier and more convenient resource to engage deeper with emerging therapeutic opportunities and alternatives,” he continued.
In addition to providing these patient-facing resources, Arons explained healthcare professionals must discuss clinical trial options with their patients during the clinical encounter.
“We encourage patients to talk to their medical team and consider all treatment options that may be available for them, including both standard of care and potential clinical trials that may be appropriate for their specific medical condition and for which they may be eligible,” Arons said.
The NBTS Clinical Trial Finder is only one piece of a larger patient education and engagement initiative the organization is currently driving. NBTS is also developing programs to improve patient-centered research and drug development, patient empowerment, and patient-input for clinical trial development.
Other healthcare experts are also advocating for better patient engagement in drug development and other clinical research. According to Planetree Director of Research Jill Harrison, PhD, more researchers need to keep patients in mind when developing patient-centered studies.
“A lot of patients and families are kept on the periphery on research in patient-centered care,” Harrison said in an earlier interview with PatientEngagementHIT.com.
“What is it that’s most important to you, the patient or the family member living with diabetes, for example? What questions do you need researched? We make sure that that gets funneled into research agendas and priority setting and funding.”
Healthcare experts must ensure that patients are actively and meaningfully participating in them, along with ensuring trials and studies incorporate the patient. If clinical trials and other studies do not have the adequate patient participation, they will not produce the data necessary to impact patient care and improve the patient experience.