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.

Asking the public: Citizens´ views on priority setting and resource allocation in democratically governed healthcare

“…The comparison in study IV showed few differences between citizen and health professional participants. This is an important finding because, in contrast to Fredriksson and Tritter (2017), I mean that the effect of asking the public could strengthen, not only the external legitimacy, but also the internal legitimacy. Knowledge about citizens holding similar views on what matters when deciding severity level, could justify and encourage the use of priority setting tools and frameworks as the Severity Framework.…”

“…The reasons for this distinction is often not explained. Fredriksson and Tritter (2017) argue that patients are expected to contribute with their own specific, experience-based knowledge on quality in results of healthcare interventions, and performance of the health professionals. In-put from patients, they mean, focuses on enhancing internal legitimacy, i.e.…”

“…between health professionals and the patients. The public, on the other hand, contributes with what Fredriksson and Tritter (2017) call the ʿcollective perspectivesʾ, generated from (greater) diversity and focusing instead on external legitimacy, i.e. legitimacy between the health service and the public (Fredriksson & Tritter, 2017;Whitty et al, 2014).…”

“…The public, on the other hand, contributes with what Fredriksson and Tritter (2017) call the ʿcollective perspectivesʾ, generated from (greater) diversity and focusing instead on external legitimacy, i.e. legitimacy between the health service and the public (Fredriksson & Tritter, 2017;Whitty et al, 2014). Even if the public are the primary target population for recruitment to the studies in this thesis, and the partici-pants is expected to speak on their own behalf, being a patient or being organised in an interest group is not an exclusion criterion.…”

“…Other (often implicit) values, will then be used and thereby undermine compliance to the decided ethical principles. There are studies indicating that such lack of compliance may be a reality not only in Sweden (Fredriksson & Tritter, 2017;Riksrevisionen, 2004), but in a number of countries (Chalkidou et al, 2017;Clark & Weale, 2012;Giacomini, Kenny & DeJean, 2009;Kenny & Joffres, 2008). To use the same generic priority-setting tools world-wide has of course numerous advantages if they are validated, but might not be warranted if they are not in compliance with each country´s own priority-setting principles.…”