Tools and Resources

This section contains tools, training and resources to support patient-researcher partnerships and collaboration in patient-centered outcomes research.

Development of this portal was informed by a community of patients, caregivers, clinicians, and researchers partnering in healthcare research as part of our Initiative to Support Patient Involvement in Research (INSPIRE). Download the full report with interview results.

Resources for both researchers and patients are listed on this page. You may access additional resources specific to each group (researchers or patients) in the navigation bar on the left.

Patient-Friendly Research Ethics and IRB training

San Diego State University: Project Tres
The goal of Project TRES is to develop a comprehensive and culturally relevant human subjects training program for members of the research team (promotores, interview and outreach workers, investigators) conducting research within the Latino community.

Organizations That Support Collaboration

Agency for Healthcare Research and Quality
The Agency for Healthcare Research and Quality's (AHRQ) mission is to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services and with other partners to make sure that the evidence is understood and used.

INVOLVE is a national advisory group that is part of, and funded by, the United Kingdom's National Institute for Health Research to support active public involvement in NHS, public health and social care research. It is one of the few government funded programs of its kind in the world. INVOLVE bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.

Patient-Centered Outcomes Research Institute (PCORI)
The Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization located in Washington, DC, was authorized by Congress in 2010. Their mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions.

Research 101

Basic Research Concepts
A web-based tutorial on basic research concepts targeting individuals new to research. The materials presented are intended to provide basic information about research and how it’s conducted. With this framework, those new to research may be better able to understand research and carry out their duties/responsibilities in a manner that preserves the integrity of the data collected.

Clinical Trials Transformation Initiative: Clinical Trial BasicsInformation on the concepts behind clinical trials, the phases of a clinical trial and patient engagement across the clinical trials continuum. This page also has videos on clinical trial participation and helpful definitions.

North American Primary Care Research Group: Beginning Research Modules
Research overview and introductory grants training geared toward junior researchers.

National Cancer Institute Research Advocacy 101
Information about cancer research advocacy including the history of advocacy, the value of advocacy in cancer research, and the roles and responsibilities of research advocates at NCI.

Roles and Responsibilities of Patient Partners

Patient and public involvement in research: What activities and tasks are involved?
Web page describing activities and tasks commonly given to patient partners in research.

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.

Other Tools and Resources
  • Initiative to Support Patient Involvement in Research (INSPIRE): Community Workshop Report (1.78 MB)

    This report presents the four learning sessions in the community workshop held July 18 and 19, 2016, in Seattle. The workshop brought together patients and researchers who are partnering on research studies throughout the Pacific Northwest. The purpose was to advance learning about effective patient-researcher partnerships and to discuss and prioritize gaps in tools, resources and training needed to support patient-researcher partnerships in patient-centered outcomes research (PCOR). This report includes the emerging ideas and themes generated from each group discussion and concludes with a report on the workshop evaluation and next steps.

The National Patient-Centered Clinical Research Network (PCORnet) Educational Materials for Patients/Patient Advocates
Resources include webinar archives, publications, and a link to a wiki regarding patient advocacy. Scroll to bottom of linked page to view.

Community Forum Deliberative Methods Demonstration: Evaluating Effectiveness and Eliciting Public Views on Use of Evidence
Report outlining the value and effectiveness of public deliberation as a method for engaging citizens in evidence generated from healthcare research.

Stay tuned for more Tools and Resources to be posted as we begin our work on the recently received Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI)!

This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Program Award  (0067-UWASH).