PerspectivePATIENT ENGAGEMENT

On the path to a science of patient input

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Science Translational Medicine  27 Apr 2016:
Vol. 8, Issue 336, pp. 336ps11
DOI: 10.1126/scitranslmed.aaf6730

Figures

  • Stakeholders are fashioning a new field of patient input, which has already begun to take flight.

    CREDIT: PAPER BOAT CREATIVE/GETTY IMAGES

Tables

  • 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
  • Table 2. Science of patient input resources with patient data sources and measurement/metrics.

    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
    Sources of
    patient
    data
    Training
    programs
    Measurement
    and metrics
    FasterCuresFrom anecdote
    to actionable:
    The case
    for patient
    perspective
    data
    TRAIN Central
    Station
    Expanding
    the science
    of patient
    input:
    Building
    smarter
    patient
    registries
    FDADraft Guidance
    for Submitting
    Patient
    Preference
    Information
    “Voice of the
    patient”
    reports
    Patient
    representative
    program
    Genetic
    Alliance
    PEER platform
    NCATSCTSA consortium
    principles of
    community engagement
    Global rare
    disease
    registries
    NORDNatural
    histories
    patient registry
    platform
    PCORIPatient-
    engagement
    rubric
    Methodology
    standards
    PCORnet:
    The national
    patient-
    centered
    clinical
    research
    network
    PCORI
    ambassadors
    program
    Patient engagement
    rubric and
    evaluation
    framework
    M-CERSIAssessing
    meaningful patient
    engagement in
    drug development:
    A definition,
    framework, and
    rubric

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