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