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Stakeholder Engagement Approaches

Public Group active 6 months, 3 weeks ago

This is a space for PCORnet stakeholders to discuss current approaches and best practices for engagement.

Why does engagement of people in research matter?

This topic contains 6 replies, has 4 voices, and was last updated by  Bill Michaels 1 year, 2 months ago.

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    Joanna Ball

    We know authentic engagement in research matters, but why?

    There are so many important and necessary components of research that compete for time and attention – but for research to be truly impactful, you must involve the people who are directly affected.

    We want to capture all the reasons you think engaging people matters and why it must be a priority in research.

    Share your thoughts below on the value of meaningful engagement and give a recent example or two of concrete ways you have used engagement effectively.


    • This topic was modified 1 year, 2 months ago by  Joanna Ball.

    Joanna Ball

    From Cherie Binns:

    Once people realize that their voice is welcome and will be listened to, there is a greater openness to the research process and ownership happens quickly.

    If people are engaged, they are less likely to drop the project prior to completion and results are more robust and have greater accuracy.

    There is nothing more powerful to a researcher than a well educated, welcomed and engaged participant to move the project along, recruit other participants and willingly encourage and empower the research team toward a timely completion and dissemination of information.

    • This reply was modified 1 year, 2 months ago by  Joanna Ball.
    • This reply was modified 1 year, 2 months ago by  Joanna Ball.

    Joanna Ball

    From Michael A. Horberg: 

    Engagement is the engine that is ever increasingly driving quality research.  The engagement of all stakeholders improves the quality, relevance, and participation in research.  For medical research to serve the needs of all of us, engagement is the conduit by which that will happen.



    Allowing (inviting) people to engage in research that has the potential to impact them or those they care for gives a sense of ownership, there is greater buy-in and more robust enrollment leading to stronger data.


    Joanna Ball

    From Kim Kimminau:

    I reacted strongly with something I heard recently – that “research accelerates at the speed of trust.” I think that statement is elegantly simple and profound. If you support this premise, then attention to building trust and collaboration among people (patients and healthy participants, researchers, advocates, policymakers, etc.) is paramount.  If on the other hand, you support the premise that it takes the formally trained mind to conceive of the most impactful research that will advance therapies and clinical care (which I would argue is basically how we’ve been “doing” research forever), then I think it sets up an experimental and empirical design to see if engagement truly matters.  My bet is on engagement to “turn the curve” and recalibrate what we should all expect from our enormous investments (personal, financial, organizational) in biomedical research.  This could include things like closing the decade+ delay in implementing evidence-based changes in care settings; encouraging faster trajectories from bench to trials to market; funding more holistic and culturally relevant strategies to engage in behaviors that promote positive health outcomes (as defined by the very people/patients research is trying to help) and making smarter investments that lead to greater equity for all individuals and families who yearn for treatments, therapies and hope.


    Rebekah S.M. Angove

    This may not be the answer you are looking for, but I think it is short sighted of researchers to think that they can be experts (or even have all the information they need) in the lived experience. As a community engaged researcher, I see partnering with “people” as a fundamental need of the research process– in the same way I partner with other colleagues across disciplines (ex: biostatistics). They have expertise and insights that I don’t have– that the project and team needs. I see engagement as just good research.


    Bill Michaels


    I believe meaningful engagement matters for research because it brings factors and dimensions into the discussion that may be missed in the absence of engagement.

    One example, yesterday I attended a webinar that discussed how detrimental stress can be to health and particularly for African Americans who confront and live with structural and systemic racism. There were numerous examples cited of how these manifest but one that resonated with the group was the need for vigilance to avoid negative situations and consequences that may result from racist attitudes and actions. This necessary vigilance creates a background noise of stress.

    I think upon hearing this many would say, “I know that”, but because it is a cultural it is often unnoticed and unarticulated. Broad engagement can lead to this and other important items being brought to the forefront of discussion in the research endeavor.

    This leads to another related example of how viewpoints can be limited if engagement is lacking. I described the work of a psychologist and why a person would go with the analogy of four people seated at a dinner table. One asks for the salt because its behind something and out of view. It’s a simple matter of others at the table to see it and pass it. I described seeing a psychologist as not indicating anything necessarily wrong but providing another important viewpoint. Engagement can add this additional viewpoint.

    I see meaningful engagement as a means to make us aware or what we do know but aren’t conscious of and informing what we don’t know.

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