Who defines the impact of research? A patient-centred opinion and call for action.

Taylor, M. A., Adam, P., Locock, L., & Kamenetzky, A. (2021). Who defines the impact of research? A patient-centred opinion and call for action. Journal of Research Management and Administration, 1(1), 6-15. https://doi.org/10.18552/jorma.v1i1.655

Abstract

Research funders wish to see meaningful impact of the work they fund. Methodologies have been produced over several years that help explain research impact. However, for health and related research impact, we believe we need to be more guided by the patients the research was undertaken for. We believe facilitated consultation and targeted patient reported impact measures would give research evaluators a better understanding of impact from the patient perspective.

Some things abut this essay in this journal

  • It is an essay, meant for provocation. It is not a research article. From those of us who are impact practitioners and not researchers, thank you to the authors and the journal
  • I love this feature which I haven’t seen in other journals. Kudos to the journal for presenting a summary in four sections: What is new? What was the approach? What is the scholarly impact? What is the wider impact?

Let me climb upon a small soap box, one that is crowded by those of us facilitating impact including the authors of this article who I have heard say this exact thing: Please do not measure impact. You can assess impact. You can collect and communicate the evidence of impact (absent an assessment system). But you should not measure impact as it implies a quantitative indicator (like a measuring tape gives you a number). I have heard these authors say the same thing yet there are seven instances where the authors speak about measuring impact.

OK…climbing down from my soap box….

Their point is that patients must be engaged when assessing the societal impacts of medical and health research. Pretty straightforward, so why aren’t we doing it?

It is important because most impact assessments focus on the researcher telling the story of impact. And definitions of impact are always through the lens of the researcher “change or benefit to the economy etc…” asking the researcher (who is completing the impact assessment) to look outwards “in the real world”. This risks an academic echo chamber, what the authors refer to as a “potentially closed loop”. Why ask the researcher to look outwards when you can ask a patient to look inwards both at the beginning (ex ante) to define what impact metrics are meaningful to them and at the end (ex post) to be a source of data about their own lived experience?

Patients are involved in agenda setting for funders and in peer review (see a recent blog I did on Power and Privilege in Peer Review) for funders so why not in impact assessment?

The paper is mostly silent on why not, but it does create the case for reconsidering the role of patients in impact assessment especially from the all-important context of the research. The patient is the context for health research. Citizen’s Juries and Patient Reported Impact Measures are proposed as two approaches for involving patient in impact assessment.

And before we go, this provocation should be extended to include people with lived experience in non-health/medical research. Research involving Indigenous communities and people should always involve community members in all stages including impact assessment. Making the Shift engages people with lived experience of homelessness in all aspects of their research.

It isn’t always about patients.

Questions for brokers:

  1. Citizen’s Juries and Patient Reported Impact Measures – what other methods might you use to engage people with lived experience in research impact assessment?
  2. Patients, Indigenous community members, people with lived experience of homelessness. How have you engaged people with lived experience in your knowledge mobilization?
  3. What do you do about impact: measure it, assess it, collect the evidence for it? Anything else?

Research Impact Canada is producing this journal club series to make evidence on KMb more accessible to knowledge brokers and to create online discussion about research on knowledge mobilization. It is designed for knowledge brokers and other knowledge mobilization stakeholders. Read this open access article. Then come back to this post and join the journal club by posting your comments.

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