This paper provides guidance for researchers about how patient input can be applied to develop patient-centered real-world evidence. It also provides recommendations for disseminating research to the patient community. Watch a corresponding webinar here. The RWD Research Design Framework is available as a standalone document here.
On July 31, 2017, the National Health Council (NHC) brought together a multi-stakeholder roundtable, with patient advocacy groups representing the majority of participants, to elicit views on RWE: 1. Definitions and uses; 2. Characteristics needed for RWE to be understood and trusted; and 3. Skillsets and tools needed by patients. Read the peer-reviewed publication here and white paper here.
In 2019, the Pfizer–Bristol Myers Squibb Alliance partnered with the National Health Council and the Arrhythmia Alliance to engage with people diagnosed with atrial fibrillation (AF). This publication presents the approaches and learnings from this process. It can serve as a case study for researchers interested in engaging patients on RWE.
This primer introduces registries sponsored by specialty societies and describes their importance in the US health system. Patients and caregivers are essential in registries and expand the movement toward patient-centeredness. This was developed by the Council of Medical Specialty Societies in partnership with the National Health Council.
The NHC partnered with the Duke-Margolis Center for Health Policy to develop the RWE Classroom.
This training is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (16203-NHC).