Disentangling patient and public involvement inhealthcare decisions: Why the difference matters
2016 (English)In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. x, no x, 1-17 p.Article in journal (Refereed) Accepted
Patient and public involvement has become an integral aspect of many developedhealth systems and is judged to be an essential driver for reform. However, littleattention has been paid to the distinctions between patients and the public, and theviews of patients are often seen to encompass those of the general public. Usingan ideal-type approach, we analyse crucial distinctions between patientinvolvement and public involvement using examples from Sweden and England.We highlight that patients have sectional interests as health services users incontrast to the citizen who engage as public policy agent reecting societalinterests. Patients draw on experiential knowledge and focus on output legitimacyand performance accountability, aim at typical representativeness, and a directresponsiveness to individual needs and preferences. In contrast, the publiccontributes with collective perspectives generated from diversity, centres on inputlegitimacy achieved through statistical representativeness, democraticaccountability and indirect responsiveness to general citizen preferences. Thus,using patients as proxies for the public fails to achieve intended goals and benetsof involvement. We conclude that understanding and measuring the impact ofpatient and public involvement can only develop with the application of a clearercomprehension of the differences.
Place, publisher, year, edition, pages
2016. Vol. x, no x, 1-17 p.
Medical and Health Sciences Public Health, Global Health, Social Medicine and Epidemiology
IdentifiersURN: urn:nbn:se:uu:diva-301954DOI: 10.1111/1467-9566.12483OAI: oai:DiVA.org:uu-301954DiVA: diva2:955752
FunderSwedish Research Council