Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Clinical practice guidelines have been critiqued for prescribing standardized care that neglects patients’ personal circumstances and knowledge in health care decisions. To make care more patient centred, standard-setters are urged to involve patients and the public in guideline development and use. Despite widespread principled support for such Patient and Public Involvement (PPI), the underlying principles guiding PPI in standardization of care are mired on confusion and contradiction. Based on the PPI literature in general, and informed by empirical research on guideline development, it is possible to identify three rationales that justify PPI in clinical standard setting. Each rationale gives rise to a conceptual model which outlines a distinct purpose of participation, who is to be included, and what they are expected to contribute. The Consumer Choice model aims to involve autonomous consumers to personalize clinical care. The Democratic Voice model aims for health care recommendations to better reflect collective values of citizens. The Lay Expertise model aims to re-contextualize universal evidence by including experiential patient knowledge. However, these models can and should not function as ‘Gold Standards’ to be consistently followed in practice. First, the models rely on two distinct types of representation, resulting in contradictory notions of how to be a good representative. Second, imposing models on practice requires a top-down control that is practically and politically problematic. Not only is control difficult to achieve, it may compromise the participatory ideal of participants co-determine practice, and may result in excluding the values and views of ‘real’ patients and public entirely.