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

• Engagement in Research
• HIPxChange
• Learning Health System
• Stakeholder Engagement

What is the Patient Advisor Toolkit 1 (PAT-1)?

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.

PAT-2 (in development) will be a complementary resource to help researchers plan and facilitate regular meetings with patient advisors.

Who are “patient advisors,” and how can they help researchers?

“Patient advisors” are patients, family members, caregivers, and other members of the public who advise researchers at one or more stages of a research project.

This toolkit focuses on orientation of adult patient advisors who do not have professional roles as health care providers, administrators, or members of a research team.

Patient advisors provide unique and valuable feedback to researchers from the perspective of people who are not embedded in the world of research. Their input can help researchers conduct patient-centered research that aligns with the real priorities, concerns, and interests of the target population the research seeks to help. Patient advisors can help researchers:

• identify patient-centered outcomes for research
• develop recruitment plans and materials
• refine data collection instruments and processes
• trouble-shoot challenges with study implementation
• interpret study findings
• disseminate results

What does PAT-1 contain?

PAT-1 contains an introduction on using the toolkit; 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 PAT-1 module includes:

• Overview
  • Participant Objectives – what patient advisors learn by completing module activities
  • Background – purpose of module activities
• Training Materials
  • Outline of Activities and Steps – list of module activities and facilitation steps, with links to orientation handouts
  • Advance Prep – list of tasks for research team, including writing on flip chart and printing copies of handouts
  • Sample Facilitation Script – suggested language for facilitator

Who should use PAT-1?

We developed this toolkit for researchers who conduct clinical trials and want input from patient stakeholders to improve the design, implementation, and dissemination of their research. We specifically created PAT-1 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.

Other potential users of the toolkit include organizations who want to develop institutional patient and family advisory councils or community advisory boards.

How was PAT-1 developed?

PAT-1 is based on an orientation program developed by WINRS from 2010 – 2013 under a National Institute of Nursing Research grant (Principal Investigator: Barbara Bowers, PhD, RN). As part of the grant, WINRS developed two community advisory boards, the Community Advisors on Research Design and Strategies (CARDS)^®. The CARDS^® provide feedback to researchers on recruitment flyers and letters, informed consent documents, survey and focus group questions, smartphone aps, websites, and other materials. To prepare the CARDS^® for their role as advisors, WINRS developed an interactive orientation focused on concrete skills for providing feedback to researchers.

In 2014, WINRS collaborated with Dr. Elizabeth Cox at the University of Wisconsin – Madison to adapt the CARDS^® orientation program for the parent advisors in her study funded by the Patient Centered Outcomes Research Institute (PCORI). The resulting Toolkit on Patient Partner Engagement in Research (TOPPER) contained original and revised materials from the WINRS orientation program, along with new materials to meet the specific orientation needs of Dr. Cox’s parent advisors.

Since 2014, WINRS staff have consulted with researchers on orientation programs for 15 distinct patient advisory boards, continuously revising orientation materials to make them easier for researchers to use and more interesting and relevant for patient advisors. PAT-1 incorporates “lessons learned” from these consultations, as well as specific suggestions from the CARDS^® for improving orientation materials and activities. PAT-1 replaces TOPPER as WINRS’ current toolkit on orientation for patient advisors.

About the Wisconsin Network for Research Support (WINRS)

WINRS is a patient and community engagement center based at the University of Wisconsin-Madison School of Nursing.  You can learn more about WINRS on this page: https://hipxchange.org/winrs/ and you can download another WINRS toolkit, Hard-to-Reach Patient Stakeholders: An Engagement Guide, on this page: https://www.hipxchange.org/HARPS

PAT-1 funding

Development of PAT-1 was supported by a grant from the Community-Academic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research, grant 9U54TR000021 from the National Center for Advancing Translational Sciences (previously grant 1 UL1 RR025011 from the National Center for Research Resources). The content is solely the responsibility of the authors and does not necessarily represent the official views of funders.

Toolkit citation

Kaiser B, Thomas G. “Patient Advisor Toolkit 1: Orientation for Patient Advisory Committees (PAT-1).” Wisconsin Network for Research Support, University of Wisconsin – School of Nursing, and Health Innovation Program. 2018; Available at https://www.hipxchange.org/PAT-1