Open to all ISPOR Members and Non-members


  • Rachel Harrington, PhD


  • Rob Camp
  • Eleanor Perfetto, PhD, MS
  • Robert McBurney, PhD, BSc

Friday, July 17, 2020

10:00AM EDT | 3:00PM GMT | 4:00PM CEST

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Many stakeholders are implementing patient-related initiatives - including engagement and involvement - in drug development, research, and delivery of healthcare. Quantifying and measuring the impact of initiatives related to “patient engagement” or “patient centeredness” has been difficult, as these terms are often used interchangeably and are often not defined. This can lead to a misunderstanding of concepts and expectations. This lack of a consistent, clear, definition for research has been highlighted in outcomes research, pharmacoepidemiology and related fields, as a barrier to implementing and measuring patient engagement in the field. The purpose of this webinar is to present the ISPOR definition of “patient engagement in research.” The definition was derived from a multi-step process, including a systematic review and qualitative analysis of existing definitions, and a multi-stakeholder review. The implications of the published definition will be shared from key stakeholder perspectives including patients, researchers, and industry.


Learning Objectives:

After attending this webinar, participants will be able to understand:

  • Define “patient engagement in research”
  • Describe the relevance and impact of adopting a standard definition of ‘patient’ engagement in research,’ as well as organizational and research implications
  • Provide initial reaction to and impressions of the definition, as well as implications for its adoption in their area, such as metrics for measuring engagement activities, and shared engagement principles for patient-industry/research collaborations.

This webinar is presented by

ISPOR Patient Centered Special Interest Group


Rachel Harrington, PhD
Research Scientist
National Committee for Quality Assurance
Washington, D.C., USA


Rob Camp
Senior Manager
Patient Engagement
Barcelona, Spain

Eleanor Perfetto, PhD, MS
Executive Vie President, Strategic Initiatives
National Health Council (NHC) and Professor Pharmaceutical Health Services Research
University of Maryland
Baltimore, MD, USA

Robert, McBurney, PhD, BSc
Chief Executive Officer
Accelerated Cure Project for Multiple Sclerosis and founder and director Optimal Medicine Ltd.
Waltham, MA, USA

Please note: On the day of the scheduled webinar, the first 500 registered participants will be accepted into the webinar. For those who are unable to attend, or would like to review the webinar at a later date, the full-length webinar recording will be made available at the ISPOR Educational Webinar Series webpage approximately 2 weeks after the scheduled Webinar.

Reservations are on a first-come, first-served basis for all ISPOR members.

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