Tools for Stakeholder Engagement in Research
This page contains brief descriptions of tools intended for stakeholder engagement across a broad spectrum of research projects that have been supported by the UW Institute for Clinical and Translational Research (UW ICTR).
Additional stakeholder engagement tools are available on the Browse Toolkits page by clicking "Engagement in Research."
- How to Approach Recruiting and Retaining Patient Stakeholders: An Engagement Guide (HARPS)
- Patient Advisory Toolkit 1: Orientation for Patient Advisory Committees (PAT-1)
- Toolkit on Patient Partner Engagement in Research (TOPPER)
- Sustaining Engagement of Blended Stakeholder Boards
- Deeply Engaging Patients with a Mix & Match of Methods
- Engaging Research Participants in Disseminating Health Experiences Research
- Engaging Veterans in Research
- Forming and Sustaining Multi-Stakeholder Panels
HARPS is a set of planning materials for researchers and others who want to engage hard-to-reach stakeholders as advisors on patient-centered projects. It contains the following materials:
- The roadmap, a fillable workbook that uses 10 guiding questions and supplemental Appendices to help develop ideas and plans for successful engagement of stakeholders.
- An 80-minute workshop video that discusses the 10 guiding questions in the roadmap and addresses key considerations for patient stakeholder engagement.
- 22 supplemental videos (approximately 20-60 seconds each) that feature patient stakeholders, community partners, and researchers discussing key topics related to engagement.
|Betty Kaiser, PhD, RN||Gay Thomas, MA||Elizabeth Cox, MD, PhD|
PAT-1 is comprehensive set of modifiable resources for conducting an orientation with patient advisors. The toolkit provides a complete, step-by-step guide to preparing patient advisors to work effectively with researchers. It contains 8 essential modules for a patient advisor orientation, 4 optional modules, and 3 appendices with additional resources for planning, conducting, and following up after orientation. Each module includes:
- An overview of the module, including participant objectives and background information
- Training materials for the module, including an outline of activities and steps, advance preparation needed for the module, and a sample facilitation script
This toolkit was developed for researchers who conduct clinical trials and want input from patient stakeholders to improve the design, implementation, and dissemination of their research. PAT-1 was specifically created as a user-friendly guide for researchers who are not conducting community-based participatory research, but want the benefits of engaging patients as advisors on research projects. Researchers can use the toolkit to develop customized orientation programs for various groups of stakeholders and a wide variety of projects.
|Betty Kaiser, PhD, RN||Gay Thomas, MA|
TOPPER is a comprehensive set of orientation materials created for patient partners on a research study—i.e., people who advise researchers throughout a research project. TOPPER contains the complete set of materials used in a three-hour orientation program for patient partners, including:
- A session agenda
- A detailed manual for two facilitators to use during the orientation
- 20 supplementary worksheets, exercises, forms, and examples
All of the materials are written in “plain language” and can be used with low-literacy patient partners. The toolkit includes activities that interest adult learners, provide opportunities for self-expression, and build group norms for respectful, focused interactions. When used to guide an orientation session, the toolkit can provide the foundation for sustained, productive communication between the research team and patient partners.
|Betty Kaiser, PhD, RN||Gay Thomas, MA||Elizabeth Cox, MD, PhD||Gwen Jacobsohn, PhD|
This toolkit was developed for researchers by researchers to guide you through the process of drafting a compelling plan for meaningfully engaging blended stakeholder boards across the lifecycle of a research or quality improvement project.
The materials in this toolkit were originally created as part of a two-part workshop series led by researchers at the University of Wisconsin - Madison, and include:
- Videos from the interactive workshop sessions, including expert PCOR speakers
- Corresponding templates and materials to the workshops for planning successful stakeholder engagement
This online training is designed to equip researchers to deeply engage patient stakeholders in research. Beyond advisory boards, this training explores multiple ways to engage patient stakeholders, including expanding roles of patients on the research team.
The training is a portal to existing resources and an independent source for high quality, vetted information that has been synthesized from peer-reviewed articles on engagement, stakeholder mapping, marketing, and ethical issues in research.
It offers practical and actionable materials to clear barriers to engagement, including templates to download, videos, resources, and literature references.
|Sarah Davis, JD, MPA||Nancy Pandhi, MD, PhD, MPH|
HealthExperiencesUSA.org brings patients’ voices to American health care and seeks to describe the widest possible range of individual experiences from the patient’s point of view. The first module provides insight into young adults’ experiences with depression, with videos on how depression feels, living with depression, coming to terms with depression, self-care strategies, seeking help, and messages to others. Modules on other conditions are planned for the future.
The Experiences Research Network is committed to implementing the DIPEx methodology for collecting and producing patient narratives so that the qualitative work is interpretive, deeply descriptive, and holistic. Because dialogue, diverse viewpoints and collaborative inquiry are essential to these dimensions of quality in qualitative research, we are committed to using team-based approaches, and multidisciplinary teams in our studies.
Lead UW Researchers
|Rachel Grob, MA, PhD||Nancy Pandhi, MD, PhD, MPH|
This action-oriented toolkit shares lessons learned from collaborating with former research participants to disseminate health experiences research through a “Patient Experiences Ambassador Program,” It is based upon our experience disseminating about the first HealthExperiencesUSA module (see above) featuring Young Adults’ Experiences of Depression in the U.S. We believe most lessons learned can be generalized to health experiences research, and note where this may not be the case. It is intended for researchers, clinicians, policymakers, or health advocates who are interested in engaging patients in dissemination efforts for a research or quality improvement project.
The toolkit includes four main sections:
- Creating a patient experiences ambassador program that invites and trains ambassadors, matches them with activities, and incorporates logistical and IRB considerations
- Planning dissemination activities with ambassadors, such as presentations, poster sessions, and exhibits, as well as using social media and traditional earned media
- Evaluation of ambassadors’ role in dissemination and their overall experience as dissemination partner
- Worksheets, resources, and tools that support the creation, execution, and evaluation of your program
|Sarah Davis, JD, MPA||Rachel Grob, MA, PhD||Cecie Culp, MPA||J. Reed Gaines, MFA||Nancy Pandhi, MD, PhD, MPH|
This toolkit contains guidance and resources for investigators and research team members who wish to engage Veterans as stakeholders in the design, implementation, and/or dissemination of their research. Veterans can provide valuable feedback that is based on personal experience relevant to the research topic being studied. Their experiences in the military, with a specific health condition, or with receiving Veterans Administration (VA) services gives them a unique perspective and expertise that can serve to improve the quality and impact of research.
Several tools and materials are included in this toolkit to help researchers:
- Develop the skills and knowledge necessary to cultivate strong relationships with Veteran stakeholders
- Find Veterans with expertise relevant to a specific research topic and the skills necessary to effectively provide feedback on research projects
- Write a well-designed and feasible Veteran engagement plan
- Guide effective Veteran engagement throughout the research process
|Nasia Safdar, MD, PhD||Nicole Brys, MPH|
This five-part lecture series was offered as part of our 2016 Patient-Centered Outcomes Research training opportunities. The recorded lectures are available in the UW SMPH Video Library.
|Caprice Greenberg, MD||Jessica Schumacher, PhD, MS||Nicole Brys, MPH|