Crisis Text Line, a 24-7 mental health texting hotline for teenagers, announced that the non-profit organization plans to share the data it has collected since launching with researchers who want to analyze it.
The Crisis Text Line program offers young people free access to a texting service if they need emotional support and information from a trained specialist. Teens can text the line for a number of mental health issues including depression and suicide, dating abuse and domestic violence, child abuse, eating disorders, and support for LGBT youth. Since launching in 2013, more than 13 million text messages have been exchanged across the service.
“From day one, this was the goal: to help people one-on-one and leverage the data for smart system change on a broad scale,” Crisis Text Line Founder and CEO Nancy Lublin said in a statement. “I’m pretty darn excited that we’re making it happen.”
Before releasing this data, Crisis Text Line spent a year putting together a data ethics committee, developing an ethical way to share data, creating an IRB process, and developing a strict application process.
Professionals on the data ethics committee are from a number of universities, hospitals, and healthcare organizations across the US including Stanford University, Icahn School of Medicine, Harvard Medical School, Yale University, University of Michigan, and Sage Bionetworks.
Researchers who want to apply for access to Crisis Text Line’s data must be affiliated with a university or research institution and have IRB approval. They are then able to apply for three tiers of data: conversation level, actor level, and message level.
Crisis Text Line explained that researchers who apply for conversation level data can ask analyze if certain crisis issues occur most on specific holidays, like Christmas and Valentine’s Day. Researchers who apply for actor level data, which is one tier higher, can ask questions like, “For a texter experiencing depression, how do issues fluctuate over time?” And researchers who apply for message-level data, the most detailed level, can assess interactions, for example whether there is a pattern of how users who struggle with self-harm describe their experiences.
A few months ago, in October 2015, Crisis Text Line received $7 million from Omidyar Network, a philanthropic investment firm, and the John S. and James L. Knight Foundation. Crisis Text Line said it would use the funds to process more than 25 million text messages that it expects to receive in 2016. It also said it planned to train 4,000 volunteer crisis counselors.
In February 2014, Crisis Text Line said it planned to make the data available to the public later that year. At the time, the company released some early findings from its data set. Data from Crisis Text Line suggested that teens with eating disorders text the hotline more often Sunday through Tuesday, teens who cut themselves don’t wait until after school to do so, and El Paso teens send three times as many texts about depression than those in Chicago.
This article first appeared on ‘Mobi Health News’ on 29 February 2016.