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Engaging Research Participants in Disseminating Health Experiences Research

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Background

This action-oriented toolkit is designed to share lessons learned from collaborating with former research participants as “Patient Experience Ambassadors” to disseminate health experiences research. The materials and lessons learned in this toolkit are from the dissemination efforts for the first HealthExperiencesUSA module, which features Young Adults’ Experiences of Depression in the U.S., but we believe the lessons learned can be generalized to other health experiences research. 

Why engage research participants in dissemination efforts?

In thinking about how we wanted to get the word out about the inaugural HealthExperiencesUSA module on Young Adults’ Experiences with Depression, it seemed only fitting to turn to the interview participants themselves for assistance.

Since a major tenet of this initiative is to empower patients to tell their own stories, it made sense to offer the opportunity for participants to both talk about their experiences with the project and to represent it more broadly.

What role did the patient experience amabassadors have and how were they trained?

Since being an Ambassador was a separate, distinct role from that of a research participant (and an advisor), we intentionally outlined this new role and provided detailed training to ease the transition into this new role.

This program featured training for the Ambassadors in basic dissemination skills (social media, traditional media, conference presentations, etc.) and the opportunity to highlight these skills by actively engaging with the research team in dissemination efforts. Ambassadors were able to choose what dissemination activities they wanted to participate in and research staff helped to coordinate the logistics to make it possible.

The experience was life changing. Patient Experiences Ambassador

Who should use this toolkit?

This toolkit is intended for researchers, clinicians, policymakers, or health advocates who are interested in engaging participants in dissemination efforts for a research or quality improvement project.

What does the toolkit contain?

This toolkit contains actionable information, lessons learned, and tools and resources to create and carry out an effective Patient Experiences Ambassador program, including:

  • Creating an ambassador program: Selecting, inviting, and training ambassadors, matching ambassadors with activities, and logistical and IRB considerations
  • Planning dissemination activities with ambassadors: Planning effective activities such as presentations, poster sessions, and exhibits, as well as using social media and traditional earned media
  • Evaluation: Evaluating the ambassadors’ role in dissemination and their overall experience as dissemination partners
  • Worksheets, resources, and tools: Materials to support the creation, execution, and evaluation of your program

How should these tools be used?

We expect that many of the lessons learned from this effort will be applicable to dissemination efforts focused on other participants’ illness experiences research projects, whether conducted by the U.S.-based Health Experiences Research Network (HERN) or by other project teams. However, there are distinctive aspects of depression (with its accompanying stigma and non-physical illness classification) and of young adults (who tend to communicate in generation-specific ways) that may require users of this toolkit to create adaptations when disseminating on other health-related topics and/or directly engaging research participants in this work.

Development of this toolkit

The Engaging Research Participants in Disseminating Health Experiences Research toolkit was developed by researchers and clinicians at the Center for Patient Partnerships and the University of Wisconsin-Madison School of Medicine & Public Health.

This project was supported by grant WPP3086 “Footprints in the Sand”, University of Wisconsin Institute for Clinical and Translational Research (UW ICTR. Additional support was provided by the University of Wisconsin School of Medicine and Public Health’s Health Innovation Program (HIP), the Wisconsin Partnership Program, and the Community-Academic Partnerships core of UW ICTR, grant 9 U54 TR000021 from the National Center for Advancing Translational Sciences (previously grant 1 UL1 RR025011 from the National Center for Research Resources), and the Center for Patient Partnerships. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or other funders.

Please send questions, comments and suggestions to HIPxChange@hip.wisc.edu.

Acknowledgments

The authors would like to acknowledge the contributions of the patient experience ambassadors and the other researchers and staff that participated in this project.

Patient Experience Ambassadors

  • Jamie Beckenstein
  • Njeri Grevious
  • Myra Holloway-Hilling
  • Colin Kluender
  • Nora Jameson
  • Jacob Sowles
  • Meghan Vieth 

Colleen Brown
Robin Conkey
Madison Crowder
Mark Schlesinger, PhD
Emily Warne
Meg Wise, PhD
Christopher Yue, MS

Toolkit citation

Davis S, Grob R, Culp C, Gaines JR, Pandhi N. “Engaging Research Participants in Disseminating Health Experiences Research.”  The Center for Patient Partnerships, the University of Wisconsin – Madison Department of Family Medicine and Community Health, the UW Institute for Clinical and Translational Research, and the UW Health Innovation Program. Madison, WI; 2018.. Available at: https://www.hipxchange.org/HealthExperiencesResearch.