Turning Pain Points Into Value Propositions

By November 1, 2021No Comments

We are kicking off a new project, with the goal of exploring and defining collective rights for our community. So far we have had 3 town halls to learn what patient communities – both leaders/group admins and members – are facing when dealing with harmful behavior of social media platforms. Themes are starting to emerge from these discussions with communities.

  • TLC is focused on implementation of learning networks and civic data trusts for patient communities
  • TLC’s work is to establish and formalize the role of patient communities and participation in the learning network model of development
  • In the coming weeks we’ll work to refine this focus based on feedback from our communities.


  • TLC may focus this work on answering different questions – and focusing in on the following: 
    • How does a patient advocacy group “bring” a digital patient community to a context?
    • Can a digital patient community effectively negotiate for the rights, governance, and/or support they need to participate? And enforced how? 
    • How do we measure the value of patient participation (and/or articulate the value to offset the costs/liability of meaningful accountability)

What are we missing as we think about turning pain points to value propositions for patient communities?

Author Andrea Downing

More posts by Andrea Downing