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, clinical contexts in the form of shared decision-making, or patient-centered care.^[1][a] A nuanced definition of which 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"^[3] are concepts closely related to patient participation.

Patient participation is also used when referring to collaborations with patients within health systems and organisations, such as in the context of participatory medicine,^[4] or Patient and Public Involvement (PPI). While such approaches are often critiqued for excluding patients from decision-making and agenda-setting opportunities,^[5] lived experience leadership is a kind of patient participation in which patients maintain decision-making power about health policy, services, research or education.

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."^[6] The idea of representativeness in patient participation has had a long history of critique. For example, advocates highlight that claims that patients in participatory roles are not necessarily representative serve to question patients' legitimacy and silence activism.^[7] More recent research into 'representativeness' call for the onus to be placed on health professionals to seek out diversity in patient collaborators, rather than on patients to be demonstrably representative.^[8]

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