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. 2018 Oct;56 Suppl 10 Suppl 1(10 Suppl 1):S41-S47.
doi: 10.1097/MLR.0000000000000790.

A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research

Katherine K Kim  1 , Dmitry Khodyakov  2 , Kate Marie  3 , Howard Taras  4 , Daniella Meeker  5 , Hugo O Campos  6 , Lucila Ohno-Machado  4
Affiliations

A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research

Katherine K Kim et al. Med Care. 2018 Oct.

Abstract

Introduction/objectives: The engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.

Materials and methods: Patient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.

Results: We operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.

Discussion/conclusion: An efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

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Conflict of interest statement

The authors declare no conflict of interest.

References

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    1. Minkler M, Wallerstein N. Community-based Participatory Research for Health: From Process to Outcomes. San Francisco: John Wiley & Sons; 2011.
    1. Kim KK, Mahajan SM, Miller JA, et al. Answering Research Questions with National Clinical Research Network. In: C. Delaney, C. Weaver, J. Warren, T. Clancy, & R. Simpson (Eds.), Big Data-Enabled Nursing. Delaney (pp. 211-226). 2017. Switzerland: Springer.
    1. National Institutes of Health. All of Us: The Precision Medicine Initiative. Available at: www.nih.gov/research-training/allofus-research-program. Accessed March 1, 2017.

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