title: Disentangling patient and public involvement in healthcare decisions: why the difference matters.
abstract: Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.
authors.affiliation: Department of Public Health and Caring Sciences, Uppsala University, Sweden.|School of Languages and Social Sciences, Aston University, UK.
authors.forename: Mio
authors.initials: M
authors.lastname: Fredriksson
authors.affiliation: School of Languages and Social Sciences, Aston University, UK.
authors.forename: Jonathan Q
authors.initials: JQ
authors.lastname: Tritter
mesh_terms: D003256:Community Participation; D004739:England; D006291:Health Policy; D006801:Humans; D010361:Patients; D011050:Policy Making; D011639:Public Opinion; D012941:Social Responsibility; D013548:Sweden
keywords: Patient and public involvement; accountability; citizen participation; legitimacy; patient empowerment; responsiveness