Development and validation of the Person-Centeredness of Research Scale

Abstract

Aim: Person-centeredness shifts the focus of healthcare and research to the needs and priorities of patients and communities, and may improve health outcomes. There are no instruments available, however, with which we can assess the degree to which research is indeed person-centered. Our aim was to develop and validate a quantitative instrument to rate person-centeredness of research. Materials & methods: Scale development and validation entailed a multistep approach that led to the seven-item Person Centeredness of Research Scale (PCoR Scale) that uses a 5-point Likert rating scale. The scale was validated using ratings of the Patient-Centered Outcomes Research Institute-funded research abstracts or abstracts submitted to a translational science meeting. Results: Psychometric properties of the PCoR Scale showed high internal consistency (α = 0.96). All seven items were highly correlated with the total score (rs range from 0.63 to 0.90). An exploratory factor analysis demonstrated that all of the items loaded on a single factor, explaining 80% of the variance. The Patient-Centered Outcomes Research Institute-funded research abstracts had a mean PCoR Scale score of 6.52 (±8.01) that was significantly higher than the abstracts submitted to the translational science meeting (-2.56 (±9.18); t = 8.09; p < 0.0001). Inter-rater reliability in the validation of the revised instrument was high (Intraclass Correlation Coefficient [ICC] (group1) = 0.89; ICC (group2) = 0.95). Conclusion: This brief, quantitative rating scale is the first to assess the main constructs that describe person-centeredness of research products. The PCoR Scale can be used to assess person-centeredness in research products; for example, by funders evaluating proposals, data networks evaluating data requests or researchers evaluating their research designs.

A taxonomy of impacts on clinical and translational research from community stakeholder engagement

“…One recently developed tool to measure an outcome of engagement is the validated Person-Centeredness of Research Scale (PCoR Scale). 51 The PCoR Scale can be used to quantify person-centredness in research products, and we have indicated in the taxonomy That the conceptual elements used to build the taxonomy came from researchers and community stakeholders supports our view that collaborative stakeholder involvement, rather than consultative involvement only, favours full and continued engagement.…”

“…The elements of this taxonomy, the categorized community stakeholder activities in research that can be assessed or measured, suggest possible measures that we have added to the taxonomy table to engender discussion and follow‐on research (Table , rightmost column). One recently developed tool to measure an outcome of engagement is the validated Person‐Centeredness of Research Scale (PCoR Scale) . The PCoR Scale can be used to quantify person‐centredness in research products, and we have indicated in the taxonomy table where this scale could be effectively used to assess the impact of community stakeholder engagement.…”

Content validation of a quantitative stakeholder engagement measure

“…Across institutions, there was a lack of attention to the development and implementation of metrics to assess community engagement in and contributions to research (Eder et al, 2018). While the newer measures noted represent progress (Hamilton et al, 2018;Wilkins et al, 2018), these measures are unlikely to address the needs identified by CTSA consortium members. GOODMAN ET AL.…”

“…However, assessment using this tool is limited to the patient stakeholder group. There is also a new measure to assess the level of patient‐centeredness of a research study on the basis of the study abstract (Wilkins, Villalta‐gil, & Houston, ). This measure gives an overall assessment of the study but does not assess perceptions of engagement from individual stakeholders involved in the study.…”

Aligning organisational priorities and implementation science for cancer research

“…Stallings et al identify critical steps in the research process where a community’s engagement can be of value and includes the pre-research phase of establishing priorities [ 12 ]. The expert knowledge and opinion provided can result in the identification of a more relevant, meaningful and person centred outputs and outcomes for future implementation research [ 13 ]. Further, the inclusion of consumer voices supports diversification of views and helps identify what matters to patients leading, to more meaningful research [ 14 , 15 ].…”