Using real-world data as scientific evidence

As health researchers, policymakers, and regulators establish standards and structure for using real-world data (RWD) as evidence in regulatory and clinical decision making, patients must be the primary focus. Since the idea of RWD is new to many in the patient community, it is important to explore the patient community’s needs, concerns, and potential contributions and use of RWE to ensure the patient voice is considered.

The National Health Council and our partners at the Duke-Margolis Center for Health Policy are pleased to announce a new webinar series: An Introduction to Real-World Data & Real-World Evidence! We kick-off with an introductory session on October 23 at 12:00 p.m. ET, and the series will continue through March 2021. This series will be free and open to the public. Learn more here.

The topic of real-world evidence (RWE) has gained considerable attention recently. As health researchers, policymakers, and regulators establish standards and structure for using real-world data (RWD) as evidence in regulatory and clinical decision making, patients must be the primary focus. Since the idea of RWD is new to many in the patient community, it is important to explore the patient community’s needs, concerns, and potential contributions and uses of RWE to ensure the patient voice is considered. 

Read the paper.

This ongoing project seeks to understand how patient-provided information (PPI) – gathered through meaningful patient engagement – can be translated by researchers into more patient-centered real-world data (RWD) research designs that reflect patients’ lived experiences. Learn more here.

How Patient Organizations and Medical Societies Can Enhance Patient Engagement in Clinical Registries and Research

View it here

  • Dr. Elisabeth Oehrlein presented at ISPOR, New Orleans: Leveraging Patient-Provided Information to Improve RWE: Getting to Good Practices on How in May 2019. View the slides: Part 1Part 2Part 3.
  • In January 2019, Dr. Eleanor Perfetto spoke in a webinar with Jennifer Graff, Brande Yaist, and Tricia Lee Wilkins the FDA Framework for Real-World Evidence. You can access the webinar here.

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Webinars

Sources of RWD: An Introduction to “Big Data”

11/06/2020 12:00 pm, Virtual, Zoom

This webinar will introduce big data, an umbrella term used to describe some types of real-world data. Big data can come from health care visits, including information from electronic health records and insurance claims, and it also can come from “non-traditional” sources such as social media and wearable devices.

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Real-World Data and Real-World Evidence 101

10/23/2020 12:00 pm, Virtual, Zoom

This webinar will introduce essential terminology related to real-world data (RWD) and real-world evidence (RWE). We will discuss how RWE complements evidence from traditional randomized clinical trials and highlight case examples.

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Consent Designed For Patients By Patients: A New Consent Standard For Patients Participating In Life-Saving Research

03/05/2020 2:00 pm, Webex

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