How to Delete Data from Crisis Text Line
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Since 2013, about one million people have texted with trained volunteers at Crisis Text Line seeking help during desperate moments. The well-known service is reached by texting the word “HOME” to 741741. What is not well known is that de-identified transcripts of the crisis conversations are retained by Crisis Text Line indefinitely.
For those who don’t want their conversations stored and used, there are ways to request deleting the data. This is currently very difficult information to find, though important to know for persons using the service, and for those who refer people there.
The following information applies for persons located within the USA.
During a Conversation
- At any time while texting with a volunteer, send the word “DELETE” “LOOFAH” in a single text.
Because LOOFAH is a difficult word to remember, you can text the volunteer:
- “I want this convo erased” or “how do I request deleting my data?”
Volunteers are trained to provide you with the word DELETE LOOFAH if you ask. If you are using the Spanish language option for the service, the same word DELETE LOOFAH is used.
Any Time After a Conversation
Even if you texted the service years ago, you may request deletion of the conversation transcript and your personal data. Here’s how:
Send an email request to firstname.lastname@example.org. Example message:
My name is [Your Name].
I used [my phone / Facebook Messenger / Whatsapp / webchat] from [phone number / account name] to send text messages. Please search all methods, accounts and numbers listed.
I request that all my personal information and all text/transcripts be permanently deleted. Please confirm back to me after this request has been fulfilled.
Crisis Text Line will want to confirm your identify when considering your request. Keep in mind you are making a request only. Crisis Text Line will decide whether to honor the request. Whatever is decided, you deserve explanation, so feel free to ask. If you are using the Spanish language option for the service, the same contact email is used.
Persons experiencing crisis moments are in no position to give consent to anything complicated. Crisis Text Line assumes, and writes in their Terms, that if you use the service you agree they can keep and use the transcript of your conversation. They promise to remove personal identifying information. Even so, many people may not be comfortable having details of situations from their personal life retained and used by Crisis Text Line and other third parties. Crisis Text Line allows use of the conversations for research purposes, for evaluating its own services, and also for commercial purposes by license agreement with a for-profit spinoff company that it created. [Update: On January 31, 2022 Crisis Text Line, Inc. announced concessions about the for-profit spinoff company.]
Here are some reforms that I believe are needed:
- Discontinue all commercial use of de-identified conversation transcripts.
- Discontinue all long-term storage or use of conversations as data, except where permission is specifically granted, such as from an optional exit survey.
- At entry to the service provide an easy-to-use data erase command. Replace the word “LOOFAH” with “NODATA” or similar.
During my volunteer training at Crisis Text Line, when I first saw the word LOOFAH, I assumed it was an acronym for a federal privacy regulation. It actually refers to a natural plant, and a cleaning implement made from the plant. As used by Crisis Text Line it is a word for “scrubbing” or removing data.
Texting Through Third Parties (Facebook, WhatsApp)
Use of a third party app when sending text messages to Crisis Text Line creates another platform for storage of data. According to Crisis Text Line, you would need to contact these other parties separately to request removal of the conversation data held by them.
A question arises, how is it possible to delete text/transcript data associated with an individual after the data is de-identified? There are different ways to de-identify data, and so I won’t presume to know the answer. If I’m able to find the answer I will provide an update here. If personal identifying information is retained 7 years, right now the clock would go back to January 2015 for retention. De-identified transcripts would still be retained indefinitely.
What I do know, and what is presented here, are the instructions for requesting deletion as of January 2022.
Related Post: Consent in Crisis
For Reference: Terms of Service Quoted Language
The information presented above is paraphrased from Crisis Text Line’s Terms of Service and website (excerpts included below). The information is based on the below quoted language from the current Terms of Service (dated January 13, 2022). As time goes by, you may wish to visit the Terms of Service for any updated requirements.
ACCESS/CHANGES TO PERSONALLY IDENTIFIABLE INFORMATION
If you are located within the U.S., you may request access to or changes to Personally Identifiable Information of yours which we have stored by emailing email@example.com. You will be asked to verify your identity in order for us to grant you access to or process changes to your Personally Identifiable Information.
If you are located within the U.S., You may request that we delete your Personally Identifiable Information, such as your full name, physical address, zip code, phone number, and texts/message transcripts by messaging the word DELETE LOOFAH to us through the modality (text, Facebook Messenger, WhatsApp, or webchat) you used to reach out to us, after which you will be prompted to confirm your request.
We will make reasonable efforts to process requests promptly, but may decline to process requests that are unreasonably repetitive, require unreasonable technical effort, jeopardize the privacy of you or others, are otherwise impractical, or which would conflict with a law enforcement matter. Additionally, we will decline to process requests if we believe preservation of your Personally Identifiable Information is necessary: (A) to comply with the law or in response to a subpoena, court order, government request, or other legal obligations; (B) to protect the interests, rights, safety, or property of CTL, its employees, agents, or volunteers; (C) to enforce our Terms; (D) in connection with a sale, merger, or change of control of CTL or its affiliates, or (E) to address fraud, security, technical issues, or to operate the Services or their infrastructure systems properly.
References from the Internet Archive: