Patient Engagement

Patients and patient groups are becoming more sophisticated about their role in the research system. How can policymakers, innovators, payers, and researchers take into account patient needs and preferences, patient-reported outcomes, and patients’ perceptions of risk and value in a meaningful way? Learn more here about models of effective patient engagement.

Featured Items

Tools you can use

Patients Count Network

Source: FasterCures

The A to Z of how medicines are developed

Source: European Patients' Academy

Patient Group Organizational Expertise & Assets Evaluation Tool

Source: Clinical Trials Transformation Initiative

Assessing Meaningful Patient Engagement in Drug Development: A Definition, Framework, and Rubric

Source: University of Maryland's Center of Excellence in Regulatory Science and Innovation (M-CERSI)

Participant-centered consent toolkit

Source: Sage Bionetworks

Patient and family engagement rubric

Source: Patient-Centered Outcomes Research Institute

A Roadmap for Patient + Family Engagement in Healthcare

Source: American Institutes for Research

Patient Group Engagement Across the Clinical Trial Continuum

Source: Clinical Trials Transformation Initiative

Clinical and Translational Sciences Awards Consortium Principles of Community Engagement

Source: NIH-National Center for Advancing Translational Sciences (NCATS)

Publications & Events

BIO Lifecycle Assessment
Lifecycle Approach to FDA’s Structured Benefit-Risk Assessment

Source: Biotechnology Innovation Organization (BIO)

Financial Compensation for PCORI-Funded Research Partners

Source: Patient-Centered Outcomes Research Institute

MDIC framework report 2015
Patient Centered Benefit-Risk Project report

Source: Medical Device Innovation Consortium

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