Here’s how we’re addressing needs.

1. A Framework For Governance

Online Health Communities need to be able to trust that the information shared in a group stays within a group.  Group members and leaders need to have their decisions about privacy respected.

2.  A Set of Enforceable Rights 

Peer support communities have fundamental human rights which are not recognized by technology platforms.

Citizens have rights when they are not online.  Light Collective Communities have defined a set of fundamental human rights which must be recognized by technology platforms.

3.  Training, Tools, & Infrastructure

Online health communities need to be equipped to moderate and sustain healthy dialogue and knowledge exchange.  These communities also need tools to protect themselves from trolling, doxxing, and harassment from malicious actors who target a vulnerable group with the intent to cause harm to members.

4.  A Career Path to Sustain Work

Peer Support Leaders often face burnout.   Some spend between 20-30 hours a week as unpaid volunteers.  As they become stewards of important shared data resources, these leaders seek training and a legitimate career path.

 

When seeking funds to support and sustain their work, they are often faced with exploitation, unfair partnerships, and/or funding from organizations that have a conflict of interest. It is time to create a path for these leaders to sustain their work.

I think we need to create a “whole-community response” in health and health care. We need to acknowledge that our “locals” (aka patients, caregivers, and other non-professionals) are essential partners in a health crisis.

- Susannah FoxFormer CTO of U.S. Department of Health & Human Services