Intended for healthcare professionals

Editorials

Clarifying the roles of patients in research

BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1463 (Published 10 April 2018) Cite this as: BMJ 2018;361:k1463

Yes. We need a rigorous paradigm of patient.

> “Common misunderstandings are a barrier to real progress”

Well said. In human discourse, meaning depends on context, and when social roles are evolving, such misunderstandings can have the full force of a head-on collision. How many times have we seen Party A state something (perhaps with the best intentions) and Party B respond, “That’s madness!” The exchange can lead to anger: “Don’t tell me you didn’t mean it that way – I know what you said!”

And that’s not to mention the clashes as perspectives shift from passive to active. Even within the patient movement anger can erupt if one party says s/he wants to shift from “passive patient” to “empowered consumer” while another activist considers “consumer” to be a pawn of the industrial economy.

> an unhelpful diversity of terms [engagement, participation, involvement]

Our “paradigm of patient” is at a breaking point. In his landmark 1962 book Structure of Scientific Revolutions (the book that brought “paradigm” into popular usage) Thomas Kuhn wrote that scientific fields have predictable stages, and that the pre-paradigm stage is characterised by the lack of agreement about fundamental principles – a stage in which practitioners literally cannot talk to each other.

Aside from those words for engagement (whose meanings overlap but are not identical), we have multiple conceptions of how to understand observations of a patient’s role or how to intervene: Hibbard’s Patient Activation Model [“PAM”], Prochaska’s TTM (trans-theoretical model), Miller & Rollnick’s motivational interviewing, etc. And that’s not to mention Angela Coulter’s The Autonomous Patient, a concept unimaginable to the benighted, though she wrote it sixteen years ago.

The most egregious example I’ve seen of this “model blindness” was the February 2013 issue of the US policy journal Health Affairs, titled “New Era of Patient Engagement.” Its articles contained at least three different implied definitions of engagement, yet not a soul noticed. No wonder we haven’t made much progress and people talk at cross purposes.

And lacking an agreed (and evidence-based) model, it’s no wonder that people keep creating policies and practices that treat patients as passive recipients. Besides, it gets so messy when policies have to respond to diversity of patient wants and aptitudes.

But Kuhn also wrote, “Discovery commences with the awareness of anomaly, i.e., with the recognition that nature has somehow violated the paradigm-induced expectations that govern normal science.” Indeed, today we constantly see examples of engaged, empowered, informed, thinking patients altering the outcomes of their cases, which makes it patently obvious that Liabo is right in saying the term “patient” no longer denotes a passive recipient of healthcare.

It can be no clearer: every time a clinician, researcher, administrator or government policy agent imagines patients as passive recipients, s/he is not only out of touch with evolved reality but is thus actively holding back progress. We the patients object.

Competing interests: No competing interests

12 April 2018
Dave deBronkart
Public speaker and patient activist
Society for Participatory Medicine
Nashua, NH, USA