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Sample stakeholder engagement publications, toolkits, and video presentations

Engaging Patients and Other Stakeholders in Research


This half hour presentation lays out the basics of WHAT, WHO, WHY and HOW of stakeholder engagement.


The Power of the Personal: Breaking Down Stereotypes and Building Human Connections

 This article explores "the power of the personal” in meetings with community stakeholders — sharing personal stories and values with one another — to move past limiting stereotypes and build real connections that advance effective, meaningful research.


A Case Study of Engaging Hard-to-Reach Participants in the Research Process

This article provides a detailed description of the innovative service, Community Advisors on Research Design and Strategies (CARDS)®. We describe the participants in the program, processes that ensure productive meetings between the CARDS® and researchers, and the outcomes of the program for researchers and the CARDS®.


How to Recruit and Retain Patient Stakeholders: An Engagement Guide (HARPS)

HARPS is a planning roadmap for researchers and others who want to engage patient stakeholders as advisors on research projects. It contains a fillable workbook that uses 10 guiding questions and supplemental Appendices to help develop ideas and plans for successful engagement of stakeholders.


Patient Advisor Toolkit 1: Orientation for Patient Advisory Committees (PAT-1)

PAT-1 is a comprehensive set of modifiable resources for conducting an orientation with patient or community stakeholders. The toolkit provides a complete, step-by-step guide to preparing lay advisors effectively used their lived experience to advise research teams.


Conducting Focus Group Research or Stakeholder Activities
in the 
New Virtual World

COVID has driven many research and stakeholder engagement activities into the virtual world. This video provides an overview of best practices related to conducting stakeholder meetings, focus groups and other activities using online platforms, such as Zoom.


Patient Engaged Research: Choosing the "Right" Patients to Avoid Pitfalls

This report is published by the Hastings Center.

"Including patients’ perspectives in the design and conduct of clinical research is thought to be useful for aligning health care with patients’ needs and priorities. But which patients are engaged—and  which should be? Engaging the “wrong” patients might even be detrimental."

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