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NIH Collaboratory
Living Textbook of
Pragmatic Clinical Trials

COVID-19 Resources

Access the latest information on COVID-19 for clinical researchers
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Rethinking Clinical Trials

A Living Textbook of Pragmatic Clinical Trials

  • Design
    • What is a Pragmatic Clinical Trial?
    • Decentralized Pragmatic Clinical Trials
    • Developing a Compelling Grant Application
    • Experimental Designs and Randomization Schemes
    • Endpoints and Outcomes
    • Analysis Plan
    • Using Electronic Health Record Data
    • Building Partnerships and Teams to Ensure a Successful Trial
    • Intervention Delivery and Complexity
    • Patient Engagement
  • Data, Tools & Conduct
    • Assessing Feasibility
    • Acquiring Real-World Data
    • Assessing Fitness-for-Use of Real-World Data
    • Study Startup
    • Participant Recruitment
    • Monitoring Intervention Fidelity and Adaptations
    • Patient-Reported Outcomes
    • Clinical Decision Support
    • Mobile Health
    • Electronic Health Records–Based Phenotyping
    • Navigating the Unknown
  • Dissemination & Implementation
    • Data Sharing and Embedded Research
    • Dissemination Approaches for Different Audiences
    • Implementation
    • End-of-Trial Decision-Making
  • Ethics & Regulatory
    • Privacy Considerations
    • Identifying Those Engaged in Research
    • Collateral Findings
    • Consent, Disclosure, and Non-Disclosure
    • Data and Safety Monitoring
    • Ethical Considerations of Data Sharing in Pragmatic Clinical Trials
    • Ethics for AI and ML
    • IRB Responsibilities and Procedures

Additional Resources

CHAPTER SECTIONS

Patient Engagement


Section 9

Additional Resources

Expand Contributors

Steven Z. George, PT, PhD

Contributing Editor

Hannah Webster, MPH

Gina Uhlenbrauck

Karen Staman, MS

NIA IMPACT Collaboratory Engaging Partners Team

 

The Engaging Partners Team of the NIA IMPACT Collaboratory focuses on engaging community partners and other interested parties—including patients, care partners, clinicians, administrators, health care system leadership, community-based organizations, and public health entities—in all aspects of the development and conduct of PCTs among people living with dementia and their care partners. They share tool kits, events, and other resources that can support effective patient engagement activities.
CTTI Recommendations: Patient Group Engagement

 

These recommendations from the Clinical Trials Transformation Initiative (CTTI) include best practices for effective engagement with patient groups in the context of clinical research.
Expansion of Expected Net Present Value Framework for Evaluating Patient Engagement Methods

 

This resource from CTTI aims to communicate the potential resourcing benefit and contribute to understanding the value of patient engagement to clinical research. It aims to support financial and resource allocation decision-making with a customized expected net present value model, commonly used by pharmaceutical and

biotechnology companies.

Research Fundamentals: Preparing You to Successfully Contribute to Research

 

This training package from the Patient-Centered Outcome Research Institute (PCORI) aims to explain patient-centered research and provide an overview of the research process to potential patient partners and other stakeholders.
Engagement Plan Template

 

An engagement plan can facilitate a successfully engaged research project. The purpose of this template from PCORI is to guide the study team in operationalizing the engagement strategy that was described in the application and assist PCORI in documenting engagement activities to understand the influence and impact of engagement on the study outcomes.

Previous Section

SECTIONS

CHAPTER SECTIONS

sections

  1. Introduction
  2. Key Principles of Patient Engagement
  3. Patient Engagement Throughout a PCT
  4. Value of Patient Engagement to PCTs
  5. Ethical Considerations for Patient Engagement
  6. Potential Challenges
  7. Case Study: Patient Engagement in the OPTIMUM Trial
  8. Equity and Inclusion
  9. Additional Resources


Version History

Published February 12, 2024

current section :

Additional Resources

  1. Introduction
  2. Key Principles of Patient Engagement
  3. Patient Engagement Throughout a PCT
  4. Value of Patient Engagement to PCTs
  5. Ethical Considerations for Patient Engagement
  6. Potential Challenges
  7. Case Study: Patient Engagement in the OPTIMUM Trial
  8. Equity and Inclusion
  9. Additional Resources

Citation:

George SZ. Patient Engagement: Additional Resources. In: Rethinking Clinical Trials: A Living Textbook of Pragmatic Clinical Trials. Bethesda, MD: NIH Pragmatic Trials Collaboratory. Available at: https://rethinkingclinicaltrials.org/chapters/design/patient-engagement/additional-resources-2/. Updated March 27, 2024. DOI: 10.28929/248.

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