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.

Patient Engagement

Featured Items

Tools you can use

Engaging People With ME As Partners in the Collaborative Research Centers

Patients Count Network

Visual Model of Patient Engagement in Benefit-Risk Assessment through the Medical Product Life Cycle

The A to Z of how medicines are developed

Patient Group Organizational Expertise & Assets Evaluation Tool

Advancing Meaningful Patient Engagement in Research, Development, and Review of Drugs

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

Participant-centered consent toolkit

Patient and family engagement rubric

A Roadmap for Patient + Family Engagement in Healthcare

Meaningful Consumer Engagement: A Toolkit for Plans, Provider Groups and Communities

Patient Group Engagement Across the Clinical Trial Continuum

Patient perspective and disease impact stratification tool

Clinical and Translational Sciences Awards Consortium Principles of Community Engagement

Implementation manual: How to operationalize the National Health Council’s Patient Information Tool

Publications & Events

Key Considerations for Developing & Integrating Patient Perspectives in Drug Development: Examination of the Duchenne Case Study

Expanding the Science of Patient Input: Pain Points and Potential

Integrating the Patient Perspective into the Development of Value Frameworks

Expanding the Science of Patient Input: Building Smarter Patient Registries

From Anecdotal to Actionable: The Case for Patient Perspective Data

How a patient advocacy group developed the first proposed draft guidance document for industry for submission to the U.S. Food and Drug Administration

Lifecycle Approach to FDA’s Structured Benefit-Risk Assessment

Financial Compensation for PCORI-Funded Research Partners

Patient Centered Benefit-Risk Project report

Executive summary of the Patient Group and Clinical Trials Project Expert Meeting

PCORI and PCORnet: Creating a research framework to engage patients

On the Path to a Science of Patient Input

Webinars

Building research-ready communities: A closer look at patient registries

FDA’s Patient-Focused Drug Development: The view from the other side of the table

Would you take a drug that could kill you? Understanding benefit-risk assessment in pharmaceutical products

FDA's Patient-Focused Drug Development Initiative and the Benefit-Risk Assessment Framework

PCORnet: The National Patient-Centered Clinical Research Network

Building new patient-centered research networks: The T1D Exchange and Registries for All Diseases

Do you have a tool, template, or publication to share with the venture philanthropy community?

Patient Engagement

Featured Items

Tools you can use

Publications & Events

Webinars

Do you have a tool, template, or publication to share with the venture philanthropy community?

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