Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement

Abstract

Aims Stakeholder engagement is fundamental to comparative effectiveness research (CER), but lacks consistent terminology. This paper aims to define stakeholder engagement and present a conceptual model for involving stakeholders in CER. Materials & methods The definitions and model were developed from a literature search, expert input and experience with the Center for Comparative Effectiveness Research in Cancer Genomics, a proof-of-concept platform for stakeholder involvement in priority setting and CER study design. Results Definitions for stakeholder and stakeholder engagement reflect the target constituencies and their role in CER. The ‘analytic-deliberative’ conceptual model for stakeholder engagement illustrates the inputs, methods and outputs relevant to CER. The model differentiates methods at each stage of the project; depicts the relationship between components; and identifies outcome measures for evaluation of the process. Conclusion While the definitions and model require testing before being broadly adopted, they are an important foundational step and will be useful for investigators, funders and stakeholder groups interested in contributing to CER.

The Physician‐as‐Stakeholder: An Exploratory Qualitative Analysis of Physicians’ Motivations for Using Shared Decision Making in the Emergency Department

“…"Stakeholders" are defined as "Individuals, organizations or communities that have a direct interest in the process and outcomes of a project, research or policy endeavor." 17 While there are many stakeholders in SDM research, including patients and families, policy-makers, and payers, EPs are possibly the most critical stakeholders regarding the translation of SDM research into clinical practice. Therefore, understanding the perspectives and needs of this group is essential.…”

Stakeholder Engagement in a Patient-Reported Outcomes (PRO) Measure Implementation: A Report from the SAFTINet Practice-based Research Network (PBRN)

“…Deverka and colleagues 15 define stakeholder engagement as "An iterative process of actively soliciting the knowledge, experience, judgment and val-ues of individuals selected to represent a broad range of direct interests in a particular issue, for the dual purposes of: 1) Creating a shared understanding; and 2) Making relevant, transparent and effective decisions." Early steps in engagement include identifying relevant stakeholders, establishing roles and responsibilities of the various stakeholders, and selecting an engagement strategy.…”

“…Stakeholder engagement methods go beyond elicitation of the perspectives of stakeholders-as exemplified by focus group or key informant interview methods-to encompass full participation and collaboration. 15,32 Through such collaboration, research and clinical stakeholders seek to select PRO measures that are "actionable, efficient, interpretable, obligatory, and user-friendly," aspects that are thought to be key features of successful PRO implementation. 33 Thus we expected that stakeholder engagement strategies would allow us to select and implement PRO measures in a way that met both research and clinical practice needs.…”

“…15 Both suggest that the first step is identifying relevant stakeholders, which may include researchers, clinicians, health care providers (the institutions), and patients, among others. According to the analytic-deliberative model for stakeholder engagement presented by Deverka et al, the stakeholders then undertake a process of gathering and analyzing the evidence (the inputs, which include stakeholder values, experience, and review of the literature), deliberating (the methods for combining evidence), and decision making (the decisions, including topic generation, study designs, and implementation strategies).…”

“…In addition to increasing relevance and interest, engaging both researchers and clinical practice stakeholders in PRO selection and implementation may reduce barriers to implementation and enhance data quality and value. 5,8 -15 While there are several frameworks and methods for stakeholder engagement, 15 there is currently limited literature on the application of these methods in PRO selection and implementation. The objective of this article is to describe the application of a stakeholder engagement methodology to PRO implementation in clinical practices involved in a practice-based research network (PBRN).…”