PCORI and RAND Project to Evaluate Measures of Patient and Stakeholder Engagement

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.

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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.

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.