Welcome! This Toolbox was developed for IPFCC’s project, Creating the Capacity for Sustainable Partnerships with Patients and Families in Research. It’s designed to be used by:

  • Patient and family advisors
  • Staff who work with patient and family advisors
  • Researchers
  • Others who want to learn more about collaborating in research

The Toolbox contains a wealth of information, tools and resources, and examples from the field that will help build your capacity to create sustainable partnerships in research. 

Quick Overview of Toolbox

You’ll find five discrete sections in addition to this section.

If you want to learn more about how this Toolbox was developed, the Project Background offers a rationale and an overview of the project and the people who contributed their time and expertise.

Are you just beginning to think about research partnerships? Engaging Patient and Family Advisors in Research will help build your understanding of the roles Patient and Family Advisory Councils (PFACs) and Patient and Family Advisors (PFAs) can play in research partnerships.

Preparing for Research Partnerships shares guidance for assessing your readiness to partner and for providing education for PFACs, PFAs, and researchers. It features key components to consider as you build the foundation for research partnerships.

For those who are ready to begin collaborating on a research project or already have experience but want to improve partnerships, Nurturing and Sustaining Effective Partnerships will help you strengthen your efforts.

Finally, there is a Tools and Resources section that contains an index of all of the tools and resources contained within the Toolbox.

A list of what you’ll find within each section is included on the first page of each section. Navigation is easy within each section or you can click back to the main Toolbox page to go to a different section.

We hope the Toolbox is helpful in your efforts to create and sustain partnerships in research. If you have questions or comments, contact us at institute@ipfcc.org.

This project was funded by the Patient-Centered Research Institute (PCORI) Engagement Award Initiative (IPFCC-1467). The content does not represent the views of PCORI, its Board of Governors, or Methodology Committee.