Current Landscape of Patient-Generated Data and Data Privacy

  • Event Date: Dec. 11, 2020
  • Event Time: 12:00 - 12:45 p.m. ET
  • Event Location: 

Moderator: Elisabeth M. Oehrlein, PhD, MS, Senior Director, Research & Programs, National Health Council

  • Craig Lipset, Advisor and Founder, Clinical Innovation Partners and Former Head of Clinical Innovation, Pfizer
  • Corey M. Dennis, CIPP/US, CIPP/E, Lead, US Privacy Officer, Sanofi

What: Patient-generated data from sources such as online forums, social media, and electronic health records are being increasingly used in real-world evidence studies. However, patients are not always aware that their data are being used or how they are protected. Our speakers will outline the current landscape of data privacy regulations and discuss how it impacts research and patient engagement.

This webinar is being presented in partnership with the ISPOR Real-World Evidence Special Interest Group. Learn more.

Who: This webinar is intended for patients, patient group staff, and others interested in learning about RWD and RWE. Learn more about the larger training series here.


Read the International Association of Privacy Professionals resource, here

Read the Future of Privacy Forum’s guide, here

Read the National Institute of Standards and Technology’s report, here

This training is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (16203-NHC).

A special thank you to the NHC’s RWE sponsors Amgen and Eli Lilly and Co. and PCORI RWE Advisory Board members.