How can we trust tech platforms when we need to be vulnerable on social media?

The Light Collective is working with peer support groups to fundamentally change the relationship between vulnerable communities and tech platforms where they reside.  As a first step we have drafted a set of rights for peers support communities online.

 “All Rights Reserved” has never benefited users.

As we work with Communities who are members of The Light Collective, we are developing a set of digital rights that is meant to put communities back in control of their data and their privacy.  Any technology platform seeking to partner with health community leaders that are part of The Light Collective must demonstrate that they are respecting the digital rights of communities.

It’s time to redefine digital rights for peer support communities

Right to proof of claims about privacy

When working with online health communities, technology platforms must go further to ensure that claims about data-sharing are backed with evidence.  It is not enough to say “Trust us, we take your privacy seriously.”

Right to a safe, clearly marked, and interoperable exit

Individuals and groups should have tools to leave tech platforms, without losing access to the raw data or knowledge that has been gathered about their health while using your service.

Right to share human vulnerabilities privately

Technology platforms cannot exploit human vulnerabilities that are shared privately in peer support groups without consent.  Exploitation can include mining, selling data, and/or conducting research on individuals or health communities without consent.  Platforms must ensure that their third party partners respect these rights.

Right to practice basic cyber hygiene

This standard outlines basic cybersecurity hygiene for technology platforms dealing with vulnerable information from health communities.

Right to an information fiduciary

No knowledge about us without us.  This standard deals with how are tech platforms share data and knowledge back with those who are affected.

Right to fairly negotiated partnerships

This standard explains how power must be shared to offer checks and balances between online peer health communities and the technology platforms where they reside.