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In early 2020 I was brand new to volunteering at a crisis helpline. Soon after beginning and still with much to learn, I found myself advocating for reform. Knowing the support of another person can make all the difference in difficult moments, I want to talk openly about my concerns and help make things better.
It begins at the doorway to a crisis service, when a person experiencing crisis has decided to reach out. Before entering, they will be asked to give consent to the organization.
Is this a mere formality, or is this a moment of great import for the whole community?
Consent, Respect and Understanding
My volunteer service was with Crisis Text Line. They provided training in a wonderfully supportive environment, and I served from April 2020 to August 2021. As I gained experience in conversations on shift, and off-shift as I did homework to complement my training, I heard something. I heard voices longing for respect, acknowledgment, and understanding, not only during moments of crisis, but in daily living with challenges of health and well-being. The message was so loud and clear I couldn’t miss it or ignore it. At the same time, I was finding a lack of respect in the system, when it came to consent.
Welcome! (Sign Here)
Crisis service organizations place a wide welcome mat in front of the door to care, but entry is conditional. I use Crisis Text Line as an example because of first-hand experience, but it’s not an isolated issue. At Crisis Text Line, when I asked questions about consent, I experienced resistance. My questions had become very specific. They were about storage and use of anonymized conversations as data; not only for study and research but also for monetized commercial use by a for-profit spinoff company. [1, 2 (p.14), 3] Crisis Text Line defended its practices for consent and data ethics, but when I persisted and asked for open discussion I was warned, then terminated.
If you compare among Terms of Service agreements used by other well-known crisis response and service organizations, you will find a range from deliberate, full protections for the person using the service, to the opposite where nearly all rights to information and data are reserved to the organization. Realistically, these broad takings are happening without the person’s knowledge. Also, it’s important to understand that individual organizations tend to resist change and will be unlikely to reform on their own. 
Leadership within the Community
Organizations and institutions within the health care community must lead when it comes to consent. Consent must be understood as a gesture of respect at both personal and institutional levels.
Authentic, informed consent is free from any form of manipulation, deception, or concealment. Consent is the willing, fully informed, clear-headed gift of permission for a known and specific thing. The giver of consent is in control and can change their mind.
When consent is discussed in the context of abuse and sexual violence, the full meaning of the word must be protected. This full meaning should be guarded for consistency within all systems of health care.
It’s not easy to reach out for help. People know and feel when they are being patronized and their concerns dismissed. When care systems lose trust, it’s a difficult injury to heal. Honoring full and authentic informed consent is an investment in trust.
When raising questions we may be told that Terms of Service are legal requirements that can’t be changed. Valid legal protections are not the issue. Remember that legal staff are advisors to organizations. Look to the board of directors or other deciding body when seeking accountability.
The entire community is hurt when individual organizations betray trust. Just as the community tends to support and pull together in common directions, so can the community seek accountability from all its members.
My message to health professionals, those in academia, data scientists and researchers, besides “thank you”, is this: Please take individual responsibility to learn whether data is ethically sourced in terms of consent. The burden for establishing respectful consent practices must not be placed on persons who are being served within the health and wellness space.
From respect, reform can come naturally. Here are two things I believe the community can do.
(1) Create a model Terms of Service and Privacy Agreement for non-profit crisis service providers.
(2) Create a scoring system for existing Terms of Service and Privacy Agreements. Example categories:
Clarity. Are key elements of agreement accessible and understandable to a person experiencing crisis? Is too much being asked?
Automatic Opt-out. No long-term data collection or processing is the default. Informed consent can be requested within an exit survey, but only with great care. Do not ask too much.
Transparency. Apply this lens to the entire organization. Are board meetings public?
Data identification. What information does the organization collect?
Data retention. Is data destroyed within a short time, or retained forever?
Data use. Does the service share data with third parties? Does it monetize data? What limits are placed on research? Are there affiliated for-profit interests?
To bring these ideas to life, I think it’s important to begin with persons having lived experience, then involve the whole community. I believe these reforms will naturally build more respect into systems of care, where it is desperately needed.
Tim Reierson (he/him) is just another human on the planet, still learning. In his professional life he is a civil engineer. He advocates for data ethics and consent in the health space.
1. Crisis Text Line. (2018, March 12). What is Loris.ai [Blog post]? Retrieved November 23, 2021 page capture on December 8, 2021 from https://web.archive.org/web/20211123054630/https://www.crisistextline.org/blog/2018/03/12/what-is-loris-ai/
2. Friedman LLP. (2018, September 6). Crisis Text Line, Inc. and Subsidiary Consolidated Financial Statements Year Ended December 31, 2017 and Independent Auditors’ Report [PDF file, page 14]. CTL. Retrieved December 8, 2021 from https://www.crisistextline.org//srv/htdocs/wp-content/uploads/2020/03/2017financialstatement-1.pdf [Note: Previous link has changed, updated link retrieved January 14, 2022 from https://www.crisistextline.org/wp-content/uploads/2020/03/2017financialstatement-1.pdf]
3. Loris (n.d.). Retrieved December 15, 2018 page capture on December 8, 2021 from https://web.archive.org/web/20181215035011/https://www.loris.ai/
4. Bella, D. (1987). Organizations and Systematic Distortion of Information. Journal of Professional Issues in Engineering, 113(4), 360-370. [Available for purchase from https://ascelibrary.org/doi/abs/10.1061/%28ASCE%291052-3928%281987%29113%3A4%28360%29]