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In response to recent announcements from Facebook, the Light Collective is proposing a community-driven approach to governance of Facebook’s platform, today (Sept 21st 2019) at the Medicine X conference in Palo Alto. 

Earlier this week Facebook announced a new plan for independent governance of their platform. Facebook’s proposal of a ‘Supreme Court’ for reviewing content is problematic for several reasons.

  • This new governance structure does not consider any modifications to Facebook’s broken privacy practices.
  • It is not feasible for a Facebook content governance body to review and make determinations about content policy separately from privacy policy.
  • Facebook proposing to appoint representatives selected by Facebook, who then will select appointees of the review board for the next ten years. This does not represent the needs of patient communities, who prefer elected representation instead.
  • Facebook decides which decisions fit into the “appeals” process which means that this body whose supposed purpose is to provide “independent oversight” will never see a case of any type that Facebook does not want it to see. 

Light Collective is announcing our own proposal for collective self-governance of patient support groups. Light Collective will be seeking input and asking for public comment from patient communities on how support groups can be self-governed.

Light Collective is formally asking the health care system, lawmakers, and Facebook to recognize the legitimacy of the patient community to self-govern their own content and privacy on Facebook through a democratic process.

Today, Light Collective representatives will be speaking publicly at Stanford Medicine X about unethical experiments that are being conducted by Facebook on their platform without consent. The Light Collective will specifically request the help of Dr. Susan Desmond-Hellmann, the only physician on the Board of Directors at Facebook for help.

The Light Collective was formed from patient communities using the Facebook platform, read more at

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