What’s Involved with Wanting to Be Involved? Comparing Expectations for Public Engagement in Health Policy across Research and Care Contexts

Abstract

Objectives:We explored public preferences for involvement in health policy decisions, across the contexts of medical research and healthcare.Approach:We e-surveyed a sample of Canadians, categorizing respondents by preferences for decision control: (1) more authority; (2) more input; (3) status quo. Two generalized ordered logistic regressions assessed influences on preferences.Results:The participation rate was 94%; 1,102 completed responses met quality criteria. The dominant preference was for more input (average = 52.0%), followed by status quo (average = 24.9%) and more authority (average = 21.1%), though preferences for more control were higher in healthcare (57.2%) than medical research (46.8%). Preferences for greater control were associated with constructs related to reduced trust in healthcare systems.Conclusion:The public expects health policy to account for public views, but not base decisions primarily on these views. More involvement was expected in healthcare than medical research policy. As opportunities for public involvement in health research grow, we anticipate increased desired involvement.

Participation preferences of health service users in health care decision‐making regarding rehabilitative care in Germany—A cross‐sectional study

“…Only in very old age groups do participation preferences decrease. 36,38,46 In contrast, at the micro level, younger age is associated with increased preferences for participation. 13,26,27,32,33 The influence of education on participation preferences at the micro and macro levels is controversial-in some studies, higher education and in other studies lower education led to increased participation preferences.…”

“…27,31 Studies focusing on health policy decision-making indicate varying preferences, but most conclude that the public prefers a consultative role. [35][36][37][38][39][40][41][42][43][44][45] The final decision is rather left to physicians, [37][38][39]41,[43][44][45] traditional decision-makers (e.g., elected officials, experts or politicians), [35][36][37] a multiprofessional group 40 or to patients and their families. 43 So far, participation preferences have been studied either only at the micro level or only at the health policy level, except for Fredriksson et al, 38 who emphasized that looking at this together will lead to a deeper understanding of the requirements for PPI in health care decision-making.…”

“…Factors associated with increased desire for participation in health care decisions at all three decision-making levels include missing trust in the health care system or in physicians 36,38,46,47 and female sex. 13,32,36 Rising age is associated with an increased desire for involvement in health policy decisions initially. Only in very old age groups do participation preferences decrease.…”

Opportunism and Opportunity Cost as Antecedents of Participatory Behavior

“…Second, "participation in corporate affairs" is usually characterized as responsible consumerism [43] or ethical consumerism to choose ethical brands [44]. Third, "participation in government affairs" is acting as a proponent of legislative or administrative ideas and putting voices into the policy process [45][46][47][48]. It also means citizens' engagement in co-production as information producers or disseminators [49][50][51][52].…”

Collaborative accountability for sustainable public health: A Korean perspective on the effective use of ICT-based health risk communication

“…Because of the externality of health problems, citizens usually shift the accountability of protecting themselves from health risks to their government. Furthermore, they want to (or should) keep interacting with their government to put their voices into policy (Barg et al, 2017;Li, Abelson, Giacomini, & Contandriopoulos, 2015). The third challenge involves co-production between citizens and government.…”