- 2023 Annual Meeting
- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- PCOR Infrastructure & Innovation
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
At PCORI, we have made great strides in making the case for engagement in research, and in showing practical ways to incorporate patients and other stakeholders seamlessly into research teams. To continue moving forward, we are now examining the best ways to systematically measure aspects of engagement to help us identify successful practices for engagement in multi-stakeholder research teams.
PCORI seeks to advance the use of engagement measures to ultimately produce information about how to best prepare teams to work with one another, how well stakeholders and researchers are working together, and how meaningful patient and stakeholder engagement is to the planning, conduct, dissemination, and use of health research. To truly understand how to engage effectively, we must be able to make comparisons between different approaches. In turn, we believe effective engagement measures will help research teams, PCORI-funded and otherwise, understand and improve how they work together.
Engagement Measures Landscape Review and Gap Analysis
Through this project, PCORI, RAND, and the stakeholders working with us hope to answer:
- What aspects of engagement should be measured?
- What measure characteristics are important, and why?
- What are the existing measures of engagement and their characteristics?
- What new or revised measures are needed?
- How can existing measures be used or refined through PCORI’s work?
What We Are Doing
PCORI commissioned this project—Engagement Measures Landscape Review and Gap Analysis—with an expert research team from the RAND Corporation to identify and assess existing measures for patient and stakeholder engagement in health research.
We know from work of other research teams that few measures for engagement exist. What is unique about our project is its emphasis on the gaps—understanding specifically where new or better measures are needed and considering how can PCORI fill those gaps. This includes learning where there are important aspects of engagement without adequate measures, carefully considering whose perspectives are captured in measures, how measures are used by different stakeholders, and identifying opportunities to improve measures that may be challenging to use and understand.
The results will help PCORI encourage the use of appropriate measures where available, and support the development or refinement of measures that address the most important gaps in engagement measurement for a range of stakeholders.
How We Will Do It
The project team has already convened two advisory groups comprised of patients, clinicians, researchers, industry leaders, and research funders to guide our work. We are also conducting qualitative research with key informants from nine different stakeholder communities.
The project team is engaging these groups—just as on any PCORI-funded project—to understand what they believe is important to measure and why. We are also asking stakeholders to tell us what attributes are most important for evaluating the quality and usefulness of a measure. For instance, is it that the measure was developed with patient input, or that it has been thoroughly tested?
RAND will search and analyze peer-reviewed and grey literature—materials and research produced by organizations outside of traditional commercial or academic publishing—in health research and in related research fields from domestic and international settings.
The landscape review will identify quantitative and qualitative measures in at least four major aspects of engagement related to all stages and activities of the research process:
- The context in which the engagement occurs, including the research setting and types of projects
- The structural components of engagement, including who is engaged, how decisions are made, and the purpose of engagement
- The process through which engagement occurs, including when and how partners engage and how they contribute to health research
- The results of engaging patients and stakeholders in health research, including their contribution to the research design and conduct.
Finally, our stakeholder advisory group will provide input on the existing and desired measures for engagement using the priority attributes identified at the start of the project.
Influencing the Science of Engagement
We are excited about this latest effort, which we hope will set a clear path to the use and development of measures that help to identify successful approaches for engaging patients and other stakeholders in research. It is an important part of our ongoing movement toward research that answers questions most important to patients and those who care for them.
November 2, 2020, 11:41 AM
Comment by Danny van Leeuwen,
Hopefully we are measuring organizational and leader (PI, Dept) readiness to engage. Infrastructure, budgeting etc
October 20, 2020, 6:47 PM
Comment by Gwen Mayes,
Excellent endeavor. As a lifelong patient and health policy follower, it is remarkable the progress being made in patient engagement and the shift from a less paternalistic, to a more holistic and patient-centered mindset especially in the development of devices and drugs. Thank you for your effort.
October 18, 2020, 8:06 PM
Comment by Karen Solomon …,
I am interested in coming involved with patient engagement research. Can you please direct or provide the information that can assist me. Thank you!
Karen Solomon Edwards
October 16, 2020, 6:55 PM
Comment by Susan Rawl,
This is incredibly important work that will help new (and senior) investigators understand the important metrics that can be used to assess how well they are doing with engagement. Only way to get better is to assess what is, and is not, working well. Thank you for doing this!
October 16, 2020, 6:24 PM
Comment by Jeanette Valen…,
Great effort to advance the science of engagement in patient-centered outcomes research. Will the project address successful approaches to including culturally and linguistically diverse populations? So important and so challenging. Learn how we pursued inclusion of Mexican immigrants in developing a stakeholder group to address postpartum depression in New Jersey with a PCORI Pipeline to Proposal award:
October 14, 2020, 9:30 PM
Comment by Marlene Peters…,
Having the right individual engage patients and stakeholders is essential when discussing research projects. This is a very important and timely topic.
October 14, 2020, 6:00 PM
Comment by janice Tufte,
As an engaged Patient Partner involved with measurement activities for over four years now, I am looking forward to see what develops out of this group. A paper recently published in NAM perspectives points to the fact that little work has been commenced regarding looking at PFE, this paper primarily focuses on health equity and PFE. https://nam.edu/patient-and-family-engaged-care-an-essential-element-of-... important part to address in the advisory groups.
October 14, 2020, 2:26 PM
Comment by Lauren Agoratus,
Check out Family Voices framework/domains for patient engagement at http://familyvoices.org/wp-content/uploads/2018/06/Assessment-of-Family-...
October 14, 2020, 3:27 AM
Comment by Diane Mastnardo,
This is very exciting! As a patient and non-traditional clinician (licensed massage therapist), I am very interested in learning about how patients and non-academic clinicians are able to partner with PCORI to help fund the questions in the communities we engage.
October 13, 2020, 11:49 PM
Comment by Dave White,
This work is vital to advancing the science of engaging patients in research. I look forward to hearing more!
October 13, 2020, 6:57 PM
Comment by Sabina Gesell,
Important to measure the personal benefit patients receive from being part of the research project. Many patients tell us being part of our PCORI project was part of their healing after a stroke, a way to deal constructively with their grief and anger, empowering.
Would also measure how much they feel they had impact on decisions.
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.