Background/Purpose: Patient engagement in research is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. To address this issue, we sought to develop an empirically based conceptual framework for meaningful patient engagement in research founded on a patient perspective.

Methods:

We conducted a qualitative analysis of transcripts from one-on-one in-depth interviews with 18 patient research partners who are living with arthritis. The data analysis involved three phases: identifying the themes, developing a framework, and confirming the framework. Specifically, we coded and organized the data, and abstracted, illustrated, described, and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to patient engagement in research to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was critically reviewed by our entire research team, including four patient research partners with arthritis.

Results: The experiences the participants had when they worked with researchers were generally positive. Eight themes emerged: Procedural Requirements, Convenience, Contributions, Support, Team Interactions, Research Environment, Feel Valued, and Benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful patient engagement in research from a patient perspective. For example, the contributions of patient research partners could be facilitated when researchers maintain certain procedural requirements, offer opportunities to engage in ways that patient research partners find convenient, and provide appropriate support, such that patient research partners feel valued and identify benefits from engaging with a research team.

Conclusion: The Meaningful Patient Engagement in Research (PEIR) Framework provides guidance regarding key aspects of meaningful patient engagement in research that could be operationalized by research teams. It could be particularly useful when patient-researcher partnerships are led by researchers with little experience of engaging patients in research.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-meaningful-patient-engagement-in-research-framework-an-empirically-based-conceptual-framework/