We are a movement that is leading the way towards People Powered Data Partnerships to transform research and health care delivery through education, advocacy and action.

We are patients, industry leaders, health care advocates and research organizations who share one simple vision: to build communities of people who are empowered with their health data assets, partnering in knowledge generation and producing a healthier future.


 Photo by Chris Slupski on Unsplash

Photo by Chris Slupski on Unsplash


Time moves differently for people with progressive, debilitating or life-threatening disease. With data in our hands, we can organize ourselves in communities and offer our rich, longitudinal information for 

 Photo by  Rob Bye  on  Unsplash

Photo by Rob Bye on Unsplash

Industry/Research Organizations

The current medical research enterprise cannot keep pace with the information needs of patients, clinicians, administrators, and policy makers. It is too narrow, expensive, slow. And its too difficult to get longitudinal data rich with information about the events and experience of the person - unless we partner with people. By partnering with peopl and honoring their contributions to research we will transform.....

 Photo by  Alexis Brown  

Photo by Alexis Brown 

Advocacy Organizations

We are fighting every day to improve the lives of patients and their caregivers. 




How to join?