Updates on Our Real-World Evidence Training Series
By Sara Gray, Associate, Programs, and Silke Schoch, Manager, Research & Programs
In 2019, the National Health Council (NHC), in partnership with the Duke-Margolis Center for Health Policy, launched a project to develop and deliver a new training program and tools to expand patient-community capacity to engage in real-world evidence (RWE) research.
Real-World Evidence (RWE) & Real-World Data (RWD) are data and data-derived interpretation that are based on sources other than conventional, randomized, controlled studies and offers insight to clinical, coverage, payment, and patient decisions.
We conducted a survey of patient-community members to understand the topics the we should focus on. This started with three virtual workshops to introduce people to what RWE/RWD are, followed by a survey. Those who attended were encouraged to complete the survey after the workshop. The link to the survey was also distributed through NHC’s member newsletter and to participants in past RWE projects.
The short survey asked participants to select the top five most-important RWE/RWD-related topics they believed should be covered in the new program. We received 35 responses, with the following priority topics:
- Introduction to RWE and RWD
- Evaluating the quality of real-world evidence for decision-making
- The role of RWE in regulatory decision-making
- The role of RWE in clinical decision-making
- How the patient community can co-develop studies that rely on RWD
- Developing a patient-friendly summary of a RWD analyses
- Current rules on patient data ownership/rights
- Patient-generated data
In addition to training on these topics, we are developing a plain-language glossary. The training will consist of live webinars, training modules, and resources, which will all be posted on the NHC website in a Real-World Evidence Classroom similar to our Value Classroom.
Live, virtual training will occur in fall of 2020. Registration will open later this summer.
To receive updates, please join our mailing list: [email protected]
This program is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (16203-NHC).