Patient participation

Patient participation is a trend that arose in answer to medical paternalism. Informed consent is a process where patients make decisions informed by the advice of medical professionals.

In recent years, the term patient participation has been used in many different contexts. These include, for example: shared decision-making, participatory medicine, health consumerism, and patient-centered care. For the latter context, i.e. patient-centered care, a more nuanced definition was proposed in 2009 by the president of the Institute for Healthcare Improvement, Donald Berwick: "The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care" are concepts closely related to patient participation. In the UK over the course of 2016 two new relevant terms have expanded in usage: Patient and Public Involvement (PPI) and Engagement (PPIE) in the sense of the older term coproduction. In 2019 a collection of papers on this research topic was published with newer information.

With regard to participatory medicine, it has proven difficult to ensure the representativeness of patients. Researchers warn that there are "three different types of representation" which have "possible applications in the context of patient engagement: democratic, statistical, and symbolic."