My colleague Evette Ludman and I were recently discussing the long-overdue movement to engage with patients and other stakeholders in all aspects of health research. To frame our discussion in Donabedian https://en.wikipedia.org/wiki/Donabedian_model terms, we talked about the distinction between the structures and processes we create to facilitate patient engagement and the true outcome we are aiming for. The goal or outcome of engaging with patients (and other stakeholders) is not a specific structure or a process. Neither is our goal limited to selecting specific research questions or research methods. The outcome we hope for is really a change of heart. Successful engagement should transform our approach to research. Our goal is to re-orient ourselves, so that the needs and priorities of patients and families (and sometimes health system stakeholders) guide our research questions and methods. While we aim for a real change of heart, that outcome is difficult to specify in a funding announcement or demonstrate in a grant application. Since we can’t really specify or demonstrate the real outcome, we tend to focus on the structures and processes intended to get us there. One example is the Patient-Centered Outcomes Research Institute (PCORI) Engagement Rubric http://www.pcori.org/funding-opportunities/what-we-mean-engagement . That rubric provides examples of patient and clinician engagement in various types of effectiveness research. I’m sure the PCORI leadership would agree that the real goal of patient engagement is a transformation of purpose rather than any specific structure or process. The rubric is not the real thing.

Thinking about PCORI’s Engagement Rubric led me to thinking about the original use of the term “rubric”. Since the Middle Ages, rubrics were the instructions - typically written in red – accompanying the Catholic Mass https://en.wikipedia.org/wiki/Rubric . I doubt that PCORI intended that historical reference, but it fits quite well. In that religious or liturgical context, rubrics were a form of stage directions. Rubrics described the outward appearance of the Mass (what to wear, how to move, etc.). As in our modern health research context, liturgical rubrics could only describe structures and processes rather than the true outcome. Those structures and processes were intended to support or facilitate a transformation or change of heart. In both the health research and liturgical contexts, that change of heart is much more difficult to specify.


In both cases, we can say that following a specific rubric is neither necessary nor sufficient to achieve the transformation that we hope for. Rubrics do not create or even describe a real change of heart. They only describe one possible structure into which that transformation might emerge.
What does this mean for those of us who would hope to do patient-centered research? Or for those of us who would hope to truly partner with health systems in collaborative learning? Rather than focusing excessively on a specific process – or rubric – for engaging with patients or other stakeholders, we must remain mindful of the real goal. The real goal is that we (researchers) will be transformed. The drive to make health research more patient-centered started because we (researchers) were often missing the point. Our choice of research questions focused too much on research that was more “fundable” or more aligned with our own beliefs. If our attempts to engage with patients, families, and health systems do not shift our focus or transform our work, then the rubric we are following is clearly not sufficient. Whatever rubric we use, our engagement with patients and health systems is not intended to reinforce our priorities or confirm what we already believe.