Why Quality of Patient-Centered Outcomes Research Partnership Instrument?
Incorporating engagement approaches into patient-centered outcomes research/community-engaged research (PCOR/CEnR) in scientific studies produces more relevant research, increased uptake of research findings, and better clinical outcomes compared to traditional research. While research studies that engage participants produce more relevant outcomes, engagement can often leave patient partners feeling overburdened and disenfranchised. These effects can be compounded in historically underrepresented and/or disadvantaged populations but can be difficult to track or quantify. An accountability tool called the QPCOR was created to monitor equitable research partnerships. QPCOR is designed for anyone to complete it, as it does not require a postgraduate degree or even a high-school diploma to be able to read, understand, and confidently answer the survey questions.
A note on IRB: QPCOR data collection at the organizational level is exempt from IRB oversight because it measures program workflow, not individual health data. We are reviewing this with our IRB team to confirm the appropriate pathway.
Is this about my personal health data? +
No. QPCOR measures the quality of the partnership process, not individual health information. It tracks organizational outcomes — who is involved, how decisions are made, and whether engagement leads to improved results.
Who fills out the QPCOR? +
Both researchers and community partners complete the measure, which allows us to identify gaps between how researchers perceive engagement and how community members experience it.
How is this different from a satisfaction survey? +
QPCOR is a validated instrument grounded in the engagement literature. It measures specific dimensions of partnership quality — power sharing, communication, co-learning — not just whether people felt good about the experience.
Measuring holds individuals accountable to the engagement process and creates opportunities to improve engagement in real time, rather than only evaluating it at the end of a study
Why measurement matters
The Science of the Quality of Patient-Centered Outcomes Research Partnership Instrument
The development of the Quality of Patient-Centered Outcomes Research Partnerships Instrument included an iterative co-creation process with psychiatric patient stakeholders and scientists, including item formulation, followed by two phases of cognitive interviews with psychiatric patient stakeholders to assess and refine instrument items. A pilot study was conducted to assess acceptability and feasibility. The pilot study of the Patient-Centered Outcomes Research Partnerships Instrument suggested feasibility and acceptability among psychiatric patient stakeholders. The Quality of Patient-Centered Outcomes Research Partnerships Instrument may be a valuable tool to enhance the quality of community engagement research practices. We are currently testing the psychometric properties of the QPCOR.
Quality of Patient-Centered Outcomes Research Partnerships Instrument (QPCOR)
Instructions: Consider your Patient-Centered Outcomes Research partnerships to date in one specific project and respond to each of the following questions on a scale from 0 = “No effort was made by researchers” to 10 = “Every effort was made by researchers”. You do not need to place your name on the instrument. Of note, implement this instrument at multiple time points throughout your study, including the beginning of PCOR and at one-month or three-month intervals depending on the length of the PCOR.
Write in a Score 0-10
- I had a clear understanding of the purpose of the study_____
- I felt listened to_____
- I feel prepared to be an equal partner in the research study._____
- Researchers were knowledgeable about people like me or were willing to learn about people like me._____
- I believe that I had choices in how I could be a part of the research study._____
- I felt accepted by all members of the research study team._____
- Researchers used language that was consistent with my values and culture_____
- Both community members and researchers are thinking of ways we can continue to work together in the future._____
- I felt comfortable engaging with the members of the research study team._____
- I felt my views were incorporated into the research study._____
Scoring: Items with a score of 60 or lower should be addressed by PCOR teams.
Citation: Fortuna, KL, Myers, A., Brooks, J, Collins-Pisano, C, Marceau, S, Pratt, S, Lyons, K, Walker, R, Thompson, S, Greene, K, Pringle, W, & Carter, K. (2021). Co-production of the quality of patient-centered outcomes research partnerships instrument for people with mental health conditions. Patient Experience, 8(1), 148-156. doi: 10.35680/2372-0247.1533
