1. Conflicts of Interest
Conflicts of interest happen when the best interests of a person or group could be affected by relationships with other people, groups, or businesses, then a conflict of interest exists. When data generated becomes an “asset” for companies without any checks on power, then we create incentive to monetize data without first asking for consent. Left unchecked, conflicts of interest between companies and online patient communities create opportunities for exploitation and harm to patients.
2. “The Matthew Effect”
The Matthew Effect is social phenomenon often linked to the idea that the rich get richer and the poor get poorer. In essence, this refers to a common concept that those who already have status are often placed in situations where they gain more, and those that do not have status typically struggle to achieve more.
3. Erosion of Trust
When vulnerable communities lose trust, we stop engaging on the tech platforms where we reside. We delete our accounts. We stop trusting that it is safe to share things with one another on social media. We become silent. As we become silent, the value of ‘listening’ to our engagement is lost for everyone involved. That’s what we call a lose/lose situation.
“Partnership.” We keep saying this word. We don’t think it means what the tech industry thinks it means.
Fair partnerships are about balancing assets and vulnerabilities.
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 in this process, we are developing resources to help groups that formed online to understand how to negotiate fair partnerships.