Understanding the Influence and Impact of Stakeholder Engagement in Patient-centered Outcomes Research: a Qualitative Study

Abstract

Background Engaging patients and other stakeholders as partners in research offers promise in improving the relevance and usefulness of research findings. Objective To explore the influence and impact of patient and other stakeholder engagement on the planning and conduct of comparative effectiveness research studies. Design Qualitative study with virtual, hour-long semi-structured interviews. Participants Fifty-eight researchers and fifty-one partners from a diverse purposeful sample of fifty-eight studies funded by the Patient-Centered Outcomes Research Institute (PCORI). Approach Content and thematic analysis of interview data. Key Results Described as an integral, long-term part of the research process, engagement influenced all aspects of the design and execution of studies. Partner influence was also dynamic and iterative, taking different forms over the course of the study. Across studies, we identified 387 discrete examples of influence and classified each as one of five types of influence, derived inductively from the interview data: co-producing, redirecting, refining, confirming, and limited. Most projects exhibited multiple types of influence, with 50 researchers and 41 partners reporting two or more types of influence within a project. Of the 387 examples of stakeholder influence, 306 had at least one reported impact on the study. Such impacts included changes to reflect the needs and preferences of patients or clinicians, as well as impacts on study feasibility, study quality, engagement scope or quality, and study relevance. Both researchers and partners identified multiple types of impact within projects, with 42 researchers and 38 partners reporting two or more types within a project. Because of these observable impacts, researchers and partners described engagement as worthwhile. Conclusions Findings provide insights for funders and institutions supporting engagement, measurement efforts, and clinical researchers aiming to conduct engaged research and observe similar influences and impacts in their own studies.

Evaluation of a stakeholder advisory board for an adolescent mental health randomized clinical trial

“…Our experience in engaging stakeholders in the development, implementation, and dissemination of a randomized clinical trial with direct community impact exposed opportunities for improvement in evaluating the process and context of engagement with diverse stakeholder partners, in addition to the value of collecting parallel feedback from study team members. Learnings from our experience should also be considered as the field addresses another evaluation gap-the availability of validated instruments that quantify the impact of stakeholder engagement on study outcomes [ 23 , 27 ]. Encouragingly, there is movement to bridge this gap.…”

“…Encouragingly, there is movement to bridge this gap. PCORI convened a workshop in 2016 to consider strategies for envisioning impact of stakeholder engagement and its evaluation [ 28 ], and Maurer [ 27 ] and colleagues conducted a qualitative study with researchers and stakeholders involved in 58 studies funded by PCORI to understand stakeholder engagement impacts on phases of the research process. Most recently, PCORI released a Science of Engagement request for proposals [ 29 ] “seeking to fund studies that build an evidence base on engagement in research, including measures to capture structure/context, process, and outcomes of engagement in research.” We look forward to the evaluation opportunities created through this funding mechanism.…”

Patient and Veteran Engagement in Health Research: the Emergence of a Field of Study

“…The perspectives and original research articles in this supplement share a focus on the lived experience of the participants of engagement, as well as exploring barriers and facilitators that can affect group cohesion. [5][6][7][8][9][10][11][12][13][14][15] Many of the studies measured satisfaction with the engagement process as a key outcome. One strong commonality amongst the perspectives and original research articles is the use of descriptive approaches, often outlining the temporal flow of the engagement process for a project and frequently accompanied by qualitative and/or mixed methods.…”

Data and model bias in artificial intelligence for healthcare applications in New Zealand

“…It is vital to understand that all patients are stakeholders as their data are being used. Stakeholder engagement can improve research appropriateness, acceptability, rigor, feasibility, delivery, and dissemination (Maurer et al, 2022). Māori and other minority groups are important stakeholders, so it is crucial to handle such data with care (Hudson and Russell, 2009;Esmail et al, 2015;Kalkman et al, 2022).…”