PCORI's Foundational Expectations for Partnerships in Research
Image
PCORI has developed six foundational expectations—building blocks for meaningful, effective, and sustainable engagement with patients, communities, and other partners in research.
The Foundational Expectations for Partnerships in Research updates the 2014 PCORI Engagement Rubric and provides expectations for meaningful engagement to advance patient-centered comparative clinical effectiveness research (CER).
Explore this resource by each expectation or by examples in practice.
Building Effective Multi-Stakeholder Research Teams
Image
Building Effective Multi-Stakeholder Research Teams offers resources created to support all members of multi-stakeholder research teams in working together.
The website is organized into two sections, each of which addresses a key area for success as an effective multi-stakeholder team: Engaging Stakeholders and Working as a Team. Each section includes evidence-based information and resources for team members to learn new concepts and skills.
Research Fundamentals: Preparing You to Successfully Contribute to Research
Image
People new to health research or patient-centered research have many questions: What is patient-centered outcomes research? How does the research process work? How can I be an effective partner on a research study?
To help answer these questions, PCORI's new on-demand training is designed for those who want to learn more about the research process. Research Fundamentals is a self-paced training that uses plain language to describe patient-centered outcomes research. It can help everyone, regardless of experience, engage and contribute with confidence. The modular format and downloadable glossary will help users quickly and easily apply what they’ve learned.
Guide for Engaging with Research Partners about Data Analysis
Activities to Support Research Partner Involvement in Data Analysis and Interpretation
Image
PCORI’s mission is to fund patient-centered, comparative clinical effectiveness research that can help patients and those who care for them make better-informed healthcare choices. Including the voices of patients, caregivers, advocacy groups, health system representatives, and others in study planning and design helps accomplish this. However, investigators are often unsure how to expand engagement during quantitative data analysis, interpretation, and results reviews. This uncertainty has led to an “engagement slump” that occurs during the data analysis phase in research projects.
To help close this gap, PCORI has developed a Guide for Engaging with Research Partners about Data and Analysis to prepare research staff to involve research partners in analyzing and interpreting quantitative data. The Guide will present concepts, terms, and examples that are specific to comparative clinical effectiveness research and patient-centered outcomes research methodologies. It provides a series of tips, resources, and activities to help research staff foster communication with partners and build their capacity to actively participate in data analysis and interpretation.
Compensation Framework
PCORI’s Compensation Framework provides guidance for establishing fair compensation levels for patients, caregivers, and organizations. While it is expected that research partners are compensated for their expertise, time and contributions, researchers may have difficulty determining the appropriate levels and methods of compensation for varied contributions to the study.
PCORI’s Compensation Framework directs researchers to consider the intensity of partner involvement according to the activities and the roles and responsibilities of engaged partners.
Budgeting for Engagement Activities
When applying for PCORI funding, engagement costs should be included in the proposed budget. If awarded, PCORI will work with the principal investigator to finalize the study budget during the contract negotiation stage. Engagement components of the study will be reviewed as part of this process, and there will be opportunity to refine these details.
To help applicants incorporate engagement into their study proposal and budget, this document presents guidance to help researchers identify budgetary items associated with engagement within a research study.
Engagement Plan (Updated Template)
Image
Effective engagement of patients and stakeholders in research requires a well-thought-out plan. Therefore, all applications for PCORI research funding must include an Engagement Plan that outlines how stakeholder partners will be involved in all phases of the study.
The Engagement Plan must be included in all PCORI applications to describe how the research team will be responsive to PCORI's Merit Review Criteria for funding. The Engagement Plan is evaluated as part of the research award application in the merit review process to assess the patient centeredness and engagement elements of the proposed research study.
Many aspects of an engagement plan may change or evolve between the submission of the research application and the start of the study. These changes may reflect a refinement in thinking about the study’s needs and could result in changes to the composition of the stakeholders who are involved, the restructuring of advisory boards and governance committees, or the methods for engaging stakeholders and evaluating engagement.
Recognizing that engagement methods may evolve, PCORI awardees submit a more robust engagement design using PCORI's Updated Engagement Plan template within the project’s first six months. Sample updated engagement plans are available for PCORI awardees upon request.
PCORI Blog: Putting PCORI's Updated Engagement Plan Template to Work in Research
Engagement Tool and Resource Repository for Patient-Centered Outcomes Research
Image
PCORI is committed to advancing patient-centered, stakeholder-engaged research and the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process. We do this to ensure that the results of the studies we fund are relevant, trustworthy, and more likely to be used in practice. PCORI also supports the uptake of engagement practices and methodologies within the broader healthcare research community.
To encourage the spread of these practices, this searchable peer-to-peer repository contains engagement-related tools and resources developed and used by PCORI awardees. It includes resources that can inform future work in patient-centered outcomes research (PCOR).
Engagement in Health Research Literature Explorer
Image
Finding literature on engagement in health research can be challenging, because there are no standard search terms or language for describing what engagement means in this context. So, PCORI staff members have put together a searchable list of publications on engagement in health research, selected through a process described here.
This resource is sortable by article topic type, types of stakeholders engaged, and phase(s) of research in which engagement occurred, from identifying research questions to sharing study results. Articles are listed if they met our search and inclusion criteria.
PCORI in Practice Webinars
PCORI developed an ongoing series of webinars about advancing patient-centered outcomes research that are designed to:
- Present examples of promising practices of meaningful engagement in all stages of the research process, featuring PCORI-funded researchers and other stakeholder partners
- Demonstrate our unique approach to research done differently by highlighting our programs and initiatives
- Feature PCORI-funded projects that address unmet needs of patients, caregivers, clinicians, and other healthcare stakeholders in making personalized clinical decisions across a wide range of conditions, populations, and treatment options
- Highlight the fundamental role that meaningful engagement of patients and other healthcare stakeholders plays in our work, and how you and your community can get involved
Please take a look at our archived webinars, as they provide both theoretical and practical guidance on planning and conducting meaningful patient and stakeholder engagement in the research process.
Posted: October 30, 2018; Updated: February 26, 2024
