HIV, Breast Cancer and Vaccines

What Do High-Profile Cases Reveal About Stakeholder Engagement in Research?

Published in: Journal of Comparative Effectiveness Research, 2016

Posted on on September 22, 2016

by Stephanie R. Morain, Thomas W. Concannon, Eve Wittenberg

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Research Question

  1. What do historical case studies of consumer engagement in health care related research reveal about best practices for designing engagement efforts and aligning them with intended outcomes?

Substantially engaging stakeholders in research involves making extensive changes to the full life cycle of research, from the initial stage of selecting research priorities to the final stages of dissemination and implementation. Recent scholarship has explored logistical and methodological challenges, including the time, training and resources required for engagement. However, inadequate attention has been given to the intended ends or goals of engagement — what do we want engagement to achieve? An examination of historical case studies can yield important insights regarding engagement and its intended ends. Using historical perspective methods, we explore how clarity about the ends of engagement can inform the design of engagement efforts and lead to better outcomes. We present several lessons for improving stakeholder-engaged research.

Key Findings

  • Failure to define the purpose of engagement activities and understand potential tradeoffs in engaging stakeholders may undermine the desired outcome.
  • Who is engaged matters; excluding relevant stakeholders can create a backlash and affect the research.
  • The processes used to engage stakeholders will influence outcomes.
  • Educating lay stakeholders on methodological concerns can enhance meaningful engagement.
  • Circumstances outside the research environment can affect engagement efforts.

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