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Who gets to say what’s patient-centered? (Hint: the one who’s IN the center) « e-Patient Dave

Who gets to say what’s patient-centered? (Hint: the one who’s IN the center) by e-PAtient Dave

PCORI’s charter – its very name – is to develop Patient Centered Outcomes. That raises the question:

Who gets to say what’s patient-centered? We should.


The scientific establishment won’t turn on a dime with this one patient weekend, so what COULD we persuade PCORI and the attending scientists about? My view:

To me the core question of the weekend is: Who gets to say what’s patient-centered? I say, it’s the one who’s in the center. Who else could possibly know if things are balanced around them?

So, I suggest: in any patient-centered outcomes project, patients should participate not just in selecting projects or goals/outcomes (from a scientist-generated menu), but in defining the goals, the desired outcomes, even what they’d like researchers to pursue.

This is a maturing of the patient’s role, and a shift in the researcher’s role to one of partnership rather than “doctor knows best.”


So here’s a possible outcome for this PCORI weekend: can we agree, as a core part of the PCORI culture, that it’s time for patients to move into the front seat, and be part of the process from the very beginning?

Patients could shift from just
selecting from scientist-defined outcomes
to helping specify what objectives would be valuable
in the patient’s view, and
even how the results should be evaluated.


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