Do you have a brain tumor, or care for someone who has a brain tumor?

Do you also use the Internet and social media to search for healthcare information or to find support?

Please consider participating in the #BTSM community survey: The survey will be open between now and March 6, 2016.

What is #BTSM?

BTSM stands for Brain Tumor Social Media, and it is used as a hashtag to aggregate conversations on Twitter (or Instagram) for anyone who is interested in looking for the latest information on brain tumors. It is also used by people who are looking for support.

Actually, support is the hashtag’s primary function because it was invented by patients.

Back in 2012 I blogged about the night the BTSM hashtag was born out of inspiration by the breast cancer community (#BCSM). Since then, #BTSM has turned into a monthly tweet chat, and has been covered by JAMA Oncology (kind of a big deal) and talked about at medical conferences.

The #BTSM tweet chat occurs on the first Sunday of each month at 6pm PT/9 pm ET. Each tweet chat revolves around a central topic and occasionally features a guest tweeter (often a representative from the healthcare profession). The chats are moderated by myself and fellow survivor Charlie Blotner.

Why the survey?

Charlie and I have been running the #BTSM tweet chat for over two years. In addition to the chat, both of us have been getting more involved in patient advocacy–we are super passionate about making sure patient voices are heard at all levels of healthcare.

After immersing ourselves deep within the culture of healthcare for the last year or so we realized we needed to practice some of what we’ve been preaching…

In order for us to host a helpful, patient-centered tweet chat, we needed to know more about YOU–the brain tumor community.

It’s OK if you have never used Twitter

The #BTSM tweet chat is hosted through Twitter, but you don’t have to have a Twitter account to participate in the survey.

We want to hear from all voices: Patients, caregivers, loved ones, and healthcare professionals.

We are not collecting personally-identifiable information in the survey. We just want to know about your experience and your feelings.

After the survey is closed we will synthesize the results and publish the data. (Which I will link to from this blog.)

If you have read this far, I hope you will consider participating in the survey. We’d love to hear from you. Click here to tell us more about your experience:

P.S. If you have never participated in a tweet chat and you want to learn how to get started, read this tutorial.