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 Fox

Here’s the path we’ve chosen.  

It’s time for a change when it comes to sharing health knowledge and protecting privacy outside the walls of a clinic.  Patients are losing access to care and meds, while desperately seeking knowledge online.

We cannot realize the benefits of social media for health until we address underlying problems that exist for vulnerable communities whose health privacy can be abused.

When our inaugural group of advocates and expert came together to decide on a vision, we converged around key aspects of our roadmap:  governance, quality content moderation,  fair partnerships, cyber hygiene best practices, and digital rights.

Fair Partnerships

We believe in no data aggregation without fair representation from digital communities.  We’re creating resources to help communities develop fair, ethical, and sustainable partnerships with tech platforms.

Cyber Hygiene

ePatients need skills to understand how to detect, identify, and respond to threats in their community, and to effectively counter the effects of medical misinformation on social networks.

Data Governance for Social Networks

We are developing a “Civic Trust” model for collective self governance of data on social networks that is driven by communities.

Digital Rights

As a first step, we’ve created standards to practice fair data governance for patient groups.

Change doesn’t happen overnight.

We’re making headway on this roadmap by educating the leaders of patient communities.  Check out the resources we’ve developed, read our blog, or watch the videos we’ve organized for peer support groups.

We need your support.  Consider donating to help us create a collective vision for patient support groups to have autonomy, rights, and safe spaces on social networks.