For Researchers

This page contains tools and resources specific to researchers including frameworks for engagement, toolkits for engagement, and outreach strategies that you may find helpful when developing your projects and looking for patients with whom to partner.

Approaches to Structuring Engagement: Case Studies

Patient-Centered Outcomes Research Institute (PCORI): Research in Action
What does patient-centered research look like in the field? These short features provide a glimpse into the workings of the projects PCORI supports. Hear from researchers what it’s like to partner with patients and other stakeholders, and from patients about being part of a research team. Learn how the work PCORI supports, “research done differently,” can make a difference for patients, caregivers, clinicians, researchers, and others.

Community-Based and Participatory Research 

Community-Based and Participatory Research Tools and Training
National Institutes of Health (NIH) resource collection for conducting community-based and participatory research.

Developing an Engagement Strategy

Canadian Institute for Health Research: Framework for Citizen Engagement
The purpose of the Citizen Engagement (CE) Framework is to help guide the Canadian Institutes of Health Research (CIHR) in developing a cohesive and consistent approach to engaging citizens in its research processes, including participating in decision-making and informing strategic priorities. 

Canadian Institute for Health Research: Strategy for Patient-Oriented Research
Canada's Strategy for Patient-Oriented Research (SPOR) is about ensuring that the right patient receives the right intervention at the right time.

Patient-Centered Outcomes Research Institute Engagement Rubric
The Engagement Rubric illustrates how input from patient and stakeholder partners can be incorporated thorughout the entire research process. 

Evaluation
Explaining to Patients What Partnering in Research Means

Patient and public involvement in research
Information on the experience of taking part in research as a patient or member of the public.

Toolkit on Patient Partner Engagement in Research (TOPPER)
TOPPER is a comprehensive set of orientation materials that were created for the patient partners on the PCORI-funded study “Family-Centered Tailoring of Pediatric Diabetes Self-Management Resources” (Principal Investigator: Elizabeth Cox, MD, PhD). In this project, the patient partners are parents of youths and teens with type 1 diabetes and serve on the Parent Advisory Boards for the project; however, the materials in TOPPER can be adapted for a variety of types of patient partners.

How to Successfully Engage Patients: Case Studies and Learning Opportunities

Agency for Healthcare Research & Quality (AHRQ) Effective Health Care (EHC) Resources for Involving Others
Resources to help researchers involve patients, consumers, and others stakeholders.

Patient-Centered Outcomes Research Institute (PCORI): Research in Action
What does patient-centered research look like in the field? These short features provide a glimpse into the workings of the projects PCORI supports. Hear from researchers what it’s like to partner with patients and other stakeholders, and from patients about being part of a research team. Learn how the work PCORI supports, “research done differently,” can make a difference for patients, caregivers, clinicians, researchers, and others.