Table 1. Resources for the science of patient input.

Shown is a selected sample; please visit: www.fastercures.org/patients-count-resources for a listing of and links to more than 70 resources.

OrganizationFrameworksMethods and
toolkits
Regulatory
and legislative
Training
programs
American Institutes for ResearchRoadmap for
patient and family
engagement health
care
BIOLifecycle approach to
FDA’s structured
benefit-risk assessment
BIO annual
patient and
health advocacy
summit
CTTIPatient engagement
across the R&D
continuum
Patient group
organizational
expertise and assets
evaluation tool
U.S. Congress21st Century
Cures Act
Patient-focused
impact assessment
of 2015
DIAVisual model of patient
engagement in
benefit-risk assessment
through the medical
product life cycle
Patient
advocate fellow
ship program
European Patients’
Academy on
Therapeutic
Innovation
The A to Z of how
medicines are
developed
Food and Drug
Law Institute
Introduction to
drug law and
regulation
Global GenesRARE toolkits
MDICFramework for
incorporating info on
patient preferences
Catalog of methods
for assessing patient
preferences
NHCAdvancing meaningful
patient engagement
(with Genetic
Alliance)
Patient info tool
Reagan UdallBig data 4
patients