Patient centricity and participation

"It is a truth universally acknowledged by policy makers, researchers and research funding bodies that patients and the public should be 'involved' in research, though there are different perspectives on what such involvement should look like and why it should happen"[Greenhalgh et al., 2019]. 1 The survey of Greenhalgh et al. [2019] lists three main arguments: (1) "patients have a right to have an input to research on their condition and that reducing the known power imbalances between researchers and patients is a moral duty of researchers"; (2) "patient and public involvement, by bringing a real-world and lived-experience perspective, improves the efficiency and value of research via a number of mechanisms: increasing its relevance to patients; improving recruitment and retention rates of research participants; extending the range of people represented in research studies; and improving dissemination of findings beyond academic audiences"; (3) "forming alliances with patients and the public is a defining feature of contemporary Mode 2 science in which knowledge is co-constructed by scientists and citizens, often beyond the walls of the university", in daily practice also known as co-design [Loiselle, 2023] (also see Gibbons et al. [2010] for an introduction to Mode 2 science).