Meeting

Advancing the Science of Patient Input in Medical Product R&D: Towards a Research Agenda - A Workshop


When: May 9, 2018 (8:30 AM Eastern)

Topic Biomedical and Health Research
Activity: Forum on Drug Discovery, Development, and Translation
Board: Board on Health Sciences Policy

  

Advancing the Science of Patient Input in Medical Product R&D: Towards a Research Agenda

WORKSHOP ▪ Wednesday, May 9, 2018 ▪ 8:30 a.m. – 5:00 p.m. ET


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Please note that in-person attendance for this workshop is at capacity. Registration for this workshop is WEBCAST ONLY. The webcast will be available on this page the day of the event.

 

 

Workshop Materials

 

 
Workshop Background and Format

Converting traditionally anecdotal patient input into rigorous, credible evidence for use by a broad range of stakeholders could better align medical product research and development (R&D) and regulatory decision-making with patient experience of and preferences for disease management and treatment. Accordingly, many efforts have been launched to advance a science of patient input—the development and use of systematic approaches and tools to collect, analyze, and apply patient input to the medical product R&D lifecycle and regulatory decision-making processes. Despite significant progress made in highlighting the value and impact of patient input in medical product R&D, and momentum towards the development of a science of patient input, there is a critical need to examine gaps in the knowledge base and other barriers that are hindering the advancement of this field and explore a research agenda for addressing them.  

The Forum on Drug Discovery, Development, and Translation at the National Academies of Sciences, Engineering, and Medicine is hosting a one-day workshop to examine gaps in knowledge and other barriers that are hindering the advancement of a science of patient input in medical product R&D, with consideration of downstream regulatory and post-market decision-making. Subject matter experts representing a range of disciplines will engage in discussions to:

  • Examine the state of the science of patient input, including successes and limitations of current efforts.
  • Explore gaps in the knowledge base and other barriers that impede progress.
  • Discuss potential components of a research agenda for addressing gaps or barriers to realizing a science of patient input.

The format of this workshop will be discussion-based and participant-driven, with a focus on active participation by workshop attendees. Each of the three workshop sessions will feature "lightning round" presentations that will highlight case studies in soliciting and applying patient input throughout medical product R&D, followed by in-room tabletop exercises and moderated discussion among workshop participants.  

 

Workshop Planning Committee Roster

  • Cynthia Grossman (co-chair), FasterCures
  • Marilyn Metcalf (co-chair), GlaxoSmithKline
  • Marc Boutin, National Health Council
  • Kenneth Getz, Tufts Center for the Study of Drug Development
  • Mats Hansson, Uppsala University
  • Lynn Hudson, Critical Path Institute 
  • Theresa Mullin, U.S. Food and Drug Administration
  • William Riley, National Institutes of Health
  • Roslyn Schneider, Pfizer Inc.
  • Suzanne Schrandt, Arthritis Foundation
  • Lana Skirboll, Sanofi 
  • Pamela Tenaerts, Clinical Trials Transformation Initiative 
  • John Wagner, Takeda Pharmaceuticals
  • Richard Willke, International Society for Pharmacoeconomics and Outcomes Research  

 

 Questions? Please contact Morgan Boname at mboname@nas.edu

 

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