The first Sunday of each month brain tumor survivors, patients, family, and caregivers use Twitter to share experiences, ideas, and information. The Brain Tumor Social Media chat (#btsm) was started a little over a year ago by Liz Salmi. The chats are moderated by Liz and Catherine Blotner and is promoted as a “patient-run Twitter community and is not owned by any organization, nonprofit or otherwise.” They are lively, passionate, and most of all, a supportive and connected community.
Occasionally, Liz and Catherine invite guests to present and answer questions from the community. On July 6, 2014, they invited our Associate Director of Scientific Operations, Jennifer Helfer, PhD, to be their guest and chat about the National Brain Tumor Society’s Clinical Trial Endpoints Initiative and learn what symptoms the #btsm community would like to see addressed when evaluating new treatments.
In collaboration with Liz, we developed a series of questions to pose during the Twitter chat. They were:
- What are the top symptoms that you think should be addressed in brain tumor drug development?
- Have you (or your loved one) taken part in a clinical trial? If not, what has prevented you from taking part in a clinical trial?
- If you did participate in a brain tumor trial, how did you find out about it?
- If you had the opportunity to help give input on the development of brain tumor clinical trials, would that be of interest?
The liveliest discussion centered around symptoms participants would like addressed through brain tumor drug development. Some suggested research on drug treatments that could ease seizures, while still fighting tumor growth. While there were many ideas offered, many spoke up for a drug treatment that reduces the amount of headaches and does not impair brain functionality.
Even as the chat moved to other topics, the community continued to provide feedback on the management and treatment of symptoms. Members of the #btsm community were invited to take the Jumpstarting Brain Tumor Drug Development Coalition Clinical Trial Endpoints Survey so that we may record and report their clinical trial experiences.
As the discussion continued, many participants confessed they were unsure if they were eligible for clinical trials, with some claiming that they assumed that benign tumors were ineligible for clinical trials. Dr. Helfer and the National Brain Tumor Society staff provided links where they could find more information and locate clinical trials for which they may be eligible.
As the conversation drew to a close, the community continued to share their experiences with clinical trials, expressed a desire for more education about what treatments and trials may be available, and offered their opinions on what symptoms they would like to see taken into account during future drug development. We encourage any patient or caregiver who has yet to take our brief questionnaire to do so today.
The entire conversation was captured and may be viewed below or on the National Brain Tumor Society’s Storify page. We want to thank the #btsm community for welcoming us to the table so warmly!