“Outcome measures in research about treatment and service provision may not seem a particularly controversial or even exciting domain for citizen involvement. Although the research landscape is changing – partly as a result of engaging stakeholders in knowledge production and its effects – the design of outcome measures has been largely immune to these developments.
“The standard way of constructing such measures – for evaluating treatment outcomes and services – has serious flaws and requires an alternative that grounds them firmly in the experiences and situations of the people whose views are being solicited.”
Thank you, dear academics and researchers, for noticing!
https://i2insights.org/2017/02/21/user-design-of-outcome-measures/
arthur~battram… 
This is the tip of the iceberg. I am reading as we speak Ta-Nehisi Coates, Between the World and Me, which describes the black experience when the black experience cannot be voiced at all in the dominant culture. The norm is that bureaucracies of all kinds define meanings and are blind to other meanings. I think whistleblowing is a way into this.
Quite so, m’learned friend.