Patient Experience Data & Patient-Led Research Training Workshop

December 5, 2023

Global Heart Hub was delighted to convene representatives from 10 global patient organisations at a dynamic two-day Patient Experience Data (PED) & Patient-Led Research Training workshop in Boston, USA, from December 5-6.

The Workshop explored how patient organisations can collect and employ high-quality patient experience data, in support of our mission to elevate the patient voice. “This training will help to build patient community capacity and amplify the importance of patient experience data and how we can use this to drive change,” says Neil Johnson, Global Heart Hub Chief Executive.

As part of the Invisible Nation project, Global Heart Hub is working with Affiliates to collect patient insights from individuals whose cholesterol levels are not at target or those who have suffered a cardiovascular event to better understand patient experiences that can help impact care and improve outcomes.

The first-of-its-kind cholesterol patient insights generation by the cardiovascular patient community is needed to help support the local implementation of the Global Cholesterol Action Plan and to drive strategies to manage unhealthy cholesterol, a critical modifiable risk factor for the world’s biggest killer, atherosclerotic cardiovascular disease (ASCVD).

Learn more about the Invisible Nation project –