The challenge of engaging the public in health policy decision-making_Public Management Review (original) (raw)
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Public Management Review, Published online 30 Jul 2014. DOI: 10.1080/14719037.2014.943269
Despite widespread calls for greater public involvement in governance, especially in relation to health policy, significant challenges remain in identifying any such legitimate ‘public’ voice. This research investigates this problem through a case study. It examines how actors experienced and interpreted a government-commissioned citizen’s jury on health spending prioritization in relation to the work of the local health care consumers’ organization. The analysis highlights an unproductive tension around this encounter, and points to more complementary ways in which such top–down and bottom–up efforts might be coordinated. It, therefore, contributes significantly to efforts to strengthen the public voice in contemporary health governance.
The Democratic Potential of Public Participation: Healthcare Governance in England
Social & Legal Studies, 2011
Public participation is commonly advocated as part of the solution to the problem of democratic deficit in the development and implementation of policy. This article considers the democratic function of different arrangements for public participation with reference to alternative rationales for democratic engagement. We review the limitations of aggregative and representative notions, before exploring the senses in which a deliberative approach based on justification to the public can increase confidence in the democratic legitimacy of decisions. This theoretical understanding is used to evaluate the democratic potential of the recently reformed framework for Patient and Public Involvement (PPI) in healthcare governance in England.
Health Economics, Policy and Law, 2015
Writing in HEPL in 2006, Wait and Nolte scoped out the vague conceptual framework and hazy research base of public involvement in health policy. In doing so, they highlighted: 1. that the meaning of the term 'public' has not been clearly defined, and is used in differing ways across decision-making contexts; 2. that little is known about the motivations and impact of individuals assuming the mantle of 'public' in different decision-making contexts; 3. that there is no firm theoretical foundation specifying the rationale for involving the public in decision making; and 4. that attempts to evaluate the impact of public involvement in decision making raise a host of methodological challenges.
Social Science & Medicine, 2002
There are a number of impulses towards public participation in health care decision making including instrumentalist, communitarian, educative and expressive impulses and the desire for increased accountability. There has, however, been little research looking systematically at the public's preferences for being involved in particular types of rationing decisions, nor indeed, has there been a critical examination of the degree of involvement desired by the public. The research reported here uses findings from focus groups and in-depth interviews to explore these questions. Eight focus groups were conducted with a total of 57 informants, four amongst randomly selected members of the public and four with informants from health and non-health related organisations. Nineteen interviews were conducted to allow the elaboration of focus group comments, to probe views more deeply and to pursue emerging themes. The findings show variations in the willingness of members of the public to be involved in health care decisions and consistency across the different forms of the public as represented by the focus groups with randomly selected citizens and pre-existing organisations. There was a strong desire in all the groups for the public to be involved both at the system and programme levels, with much less willingness to be involved at the individual level. At the system and programme levels informants generally favoured consultation, without responsibility for decisions, but with the guarantee that their contribution would be heard and that decisions taken following consultation would be explained. At the patient level informants felt that the public should participate only by setting criteria for deciding between potential beneficiaries of treatment. The public has much to contribute, particularly at the system and programme levels, to supplement the inputs of health care professionals. r
Representativeness, legitimacy and power in public involvement in healthcare management
Public participation in health-service management is an increasingly prominent policy internationally. Frequently, though, academic studies have found it marginalized by health professionals who, keen to retain control over decision-making, undermine the legitimacy of involved members of the public, in particular by questioning their representativeness. This paper examines this negotiation of representative legitimacy between staff and involved users by drawing on a qualitative study of service-user involvement in pilot cancer-genetics services recently introduced in England, using interviews, participant observation and documentary analysis. In contrast to the findings of much of the literature, health professionals identified some degree of representative legitimacy in the contributions made by users. However, the ways in which staff and users constructed representativeness diverged significantly. Where staff valued the identities of users as biomedical and lay subjects, users themselves described the legitimacy of their contribution in more expansive terms of knowledge and citizenship. My analysis seeks to show how disputes over representativeness relate not just to a struggle for power according to contrasting group interests, but also to a substantive divergence in understanding of the nature of representativeness in the context of state-orchestrated efforts to increase public participation. This divergence might suggest problems with the enactment of such aspirations in practice; alternatively, however, contestation of representative legitimacy might be understood as reflecting ambiguities in policy-level objectives for participation, which secure implementation by accommodating the divergent constructions of those charged with putting initiatives into practice.
Disentangling patient and public involvement in healthcare decisions: why the difference matters
Sociology of Health and Illness, 2016
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 services users in contrast to the citizen who engage as 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, centers 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.
Evaluation of a deliberative approach to citizen involvement in health care priority setting
Leadership in Health Services, 2014
Purpose -The purpose of this paper is to describe and evaluate a novel approach to citizen engagement in health priority setting carried out in the context of Primary Care Trust (PCT) commissioning in the English National Health Service. Design/methodology/approach -Four deliberative events were held with 139 citizens taking part in total. Events design incorporated elements of the Twenty-first Century Town Meeting and the World Café, and involved specially-designed dice games. Evaluation surveys reporting quantitative and qualitative participant responses were combined with follow-up interviews with both PCT staff and members of the public. An evaluation framework based on previous literature was employed. Findings -The evaluation demonstrates high levels of enjoyment, learning and deliberative engagement. However, concerns were expressed over the leading nature of the voting questions and, in a small minority of responses, the simplified scenarios used in dice games. The engagement exercises also appeared to have minimal impact on subsequent Primary Care Trust resource allocation, confirming a wider concern about the influence of public participation on policy decision making. The public engagement activities had considerable educative and political benefits and overall the evaluation indicates that the specific deliberative tools developed for the exercise facilitated a high level of discussion. Originality/value -This paper helps to fill the gap in empirical evaluations of deliberative approaches to citizen involvement in health care priority setting. It reports on a novel approach and considers a range of implications for future research and practice. The study raises important questions over the role of public engagement in driving priority setting decision making.
Public Participation in the New NHS: No Closer to Citizen Control?
Social Policy & Administration, 2002
Over the last decade support for increasing public participation in decisions regarding the planning and delivery of health services has become a familiar feature of the policy agenda for the UK National Health Service. This paper reviews current Labour policy towards public participation and reports on the response of primary care groups (PCGs) to recent Labour directives to make patient and public involvement an integral part of the way they work, presenting the findings of a survey conducted in one English health region. The experience of these PCGs suggests that, despite the diverse backgrounds of board members, there is marked consensus between local and central decision makers as to their understanding of public participation. Whilst academic debates have tended to conceptualize participation in dualist terms as a form of consumerism or of citizenship, the survey data suggest that in the context of local implementation public participation is framed within a new public management perspective which values it as an aid to organizational learning. The findings of this study highlight obstacles to securing effective public participation, including a lack of substantive guidance regarding policy implementation that produces uncertainty amongst local decision makers as to how best to proceed. The inherent limitations of public participation within the new public management paradigm suggest that democratic renewal, one of the goals of the government's modernization agenda, is unlikely to be achieved.