Project Summary

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 Quality of Patient-Centered Outcomes Research Partnership Instrument (QPCOR) was created to monitor equitable research partnerships. QPCOR is designed for anyone to be able 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. QPCOR has never been psychometrically validated. This study will bridge this gap by determining how accurately QPCOR measures the quality of engagement in research studies with disadvantaged and underrepresented populations. 

This project will examine the psychometric properties (validity and reliability) of the QPCOR and determine its usefulness in measuring the underlying constructs in a national sample of 300 people with a wide range of abilities. Investigators will conduct a prospective test-retest and collect data at baseline and one month. The team will reach respondents on the phone, discuss the purpose of the call and record their responses to study questionnaires if they consented. 

Participants will be recruited through multiple sources, which have been successful in an investigator’s previous studies within a similar timeframe. The first recruitment methodology will consist of virtual recruitment via emails, social media, listservs, newsletters and participation in research team meetings of Recruitment Committee members' partnership networks. Recruitment Committee members have identified 5,000–6,000 potential participants. The study team will recruit 300 adults across all races and ethnicities. Each respondent will answer a series of questions to ensure they are cognitively able to move forward with the study. This sample size will allow the team to evaluate differences in participants' responses based on sex, race and/or ethnicity, age, disability status, and cognitive status. 

This study will utilize the following data sources and measurements: 

  • Quality of Partnership: QPCOR, a 10-question tool that assesses the strength and quality of the partnership 
  • Engagement: Research Engagement Survey Tool (REST), a nine-question scale that assesses how engaged research partners are in research 
  • Equity in Partnerships: A self-assessment tool that contains 11 sections, five parts and 63 questions that assesses the strengths and weaknesses of a partnership 
  • Trust: The Health Care System Distrust Scale, a 10-question tool designed to assess distrust in the medical system 

Investigators will examine the internal consistency (reliability) and construct validity of QPCOR. The lack of a gold standard measure of engagement quality will require validation approaches similar to those used to validate REST (e.g., correlative validity, triangulation). Investigators will use a method called the Peer and Academic Partnership to achieve the goals of this study. This method was created by study team members and has been successfully used in other PCORI-funded studies based on the Centers for Disease Control and Prevention’s eight Community Engagement Principles. Investigators will also leverage the Collaborative, which includes scientists (with or without lived experience), patients, and/or family or caregivers of people trained and actively engaging in patient-centered comparative clinical effectiveness research. 

The Collaborative has partnerships with a national network of PCORI-funded researchers and national organizations. These organizations will bring the patient perspective into all research activities (i.e., study oversight, weekly participation in research team meetings, support in recruitment and retention, analysis of findings, and dissemination of results). All individuals will have equal decision-making authority on all aspects of the proposed studies.

Project Information

Karen Fortuna, MSW, Ph.D., LICSW
Dartmouth-Hitchcock Clinic
$719,749 *

Key Dates

30 months *
April 2024
2024

*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.

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Last updated: April 23, 2024