Blog for the Patient Experience Library:
Traditional methods of gathering patient feedback are “stuck in child-parent mode”, according to this thought-provoking editorial from the British Journal of Psychiatry Bulletin. The author, David Gilbert, writes from his experiences as both professional and patient, and calls for a fresh approach to patient engagement.
For Gilbert, “Patient and public engagement, as traditionally conceived, buffers power by distancing patients from decision-making”.
With conventional patient feedback, people are invited to “fill in questionnaires, attend focus groups or tell their stories… The focus is what happened to them in the past, mostly about their experience of services (rather than living with a condition, or about their lives beyond the institutional scope of interest)”.
Subsequently, “the meaning of their data is left to professionals to assess… based on… institutionalised thinking (often what is seen as feasible rather than necessary)”.
Gilbert makes the important point that “Patients are not permitted to eyeball the data or bring their own interpretations to it”. At the local level, patient access to feedback data may vary between Trusts and CCGs. But at the national level, Gilbert’s observation chimes with our own view that feedback data is held by so many different organisations in so many places and so many varying formats that even dedicated patient experience staff can struggle to keep up with it all. For patients and public, the task is nigh on impossible.
The editorial goes on to explore the “adolescent-parent” relationship engendered by committee processes that invite patient representatives but then marginalise their contributions. And it covers much extra ground besides, including a case study of a real-life exercise in rethinking engagement via the Sussex Musculoskeletal (MSK) Partnership.
View the blog here: https://www.patientlibrary.net/cgi-bin/library.cgi?page=Blog;prevref=;top=76