"Ordinary people only": knowledge, representativeness and the publics of public participation in healthcare

Public involvement in healthcare is a prominent policy in countries across the economically developed world. A growing body of academic literature has focused on public participation, often presenting dichotomies between good and bad practice: between initiatives that offer empowerment and those constrained by consumerism, or between those which rely for recruitment on self-selecting members of the public, and those including a more broad-based, statistically representative group. In this paper I discuss the apparent tensions between differing rationales for participation, relating recent discussions about the nature of representation in public involvement to parallel writings about the contribution of laypeople’s expertise and experience. In the academic literature, there is, I suggest, a thin line between democratic justifications for involvement, suggesting a representative role for involved publics, and technocratic ideas about the potential ‘expert’ contributions of particular subgroups of the public. Analysing recent policy documents on participation in healthcare in England, I seek moreover to show how contemporary policy transcends both categories, demanding complex roles of involved publics which invoke various qualities seen as important in governing the interface between state and society. I relate this to social-theoretical perspectives on the relationship between governmental authority and citizens in late-modern society.

Representativeness, legitimacy and power in public involvement in health-care 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.

Whose health, whose care, whose say? Some comments on public involvement in new NHS commissioning arrangements

Recent health policy in England has demanded greater involvement of patients and the public in the commissioning of health and social care services. Public involvement is seen as a means of driving up service quality, reducing health inequalities and achieving value in commissioning decisions. This paper presents a summary and analysis of the forms that public involvement in commissioning are to take, along with empirical analysis from a qualitative study of service-user involvement. It is argued that the diversity of constituencies covered by the notion of ‘public involvement’, and the breadth of aims that public involvement is expected to achieve, require careful disaggregation. Public involvement in commissioning may encompass a variety of interest groups, whose inputs may include population needs assessment, evaluation of service quality, advocacy of the interests of a particular patient group or service, or a combination of all of these. Each of these roles may be legitimate, but there are significant tensions between them. The extent to which the structures for public involvement proposed recognize these possible tensions is arguably limited. Notably, new Local Involvement Networks (LINks), which will feed into commissioning decisions, are set as the arbiters of these different interests, a demanding role which will require considerable skill, tenacity and robustness if it is to be fulfilled effectively.

Examining the Validity of the GRE General Test Scores and Undergraduate GPA for Predicting Success in Graduate School at a Large Racially and Ethnically Diverse Public University in Southeast Florida

The purpose of the study was to determine the degree of relationships among GRE scores, undergraduate GPA (UGPA), and success in graduate school, as measured by first year graduate GPA (FGPA), cumulative graduate GPA, and degree attainment status. A second aim of the study was to determine whether the relationships between the composite predictor (GRE scores and UGPA) and the three success measures differed by race/ethnicity and sex. A total of 7,367 graduate student records (masters, 5,990; doctoral: 1,377) from 2000 to 2010 were used to evaluate the relationships among GRE scores, UGPA and the three success measures. Pearson’s correlation, multiple linear and logistic regression, and hierarchical multiple linear and logistic regression analyses were performed to answer the research questions. The results of the correlational analyses differed by degree level. For master’s students, the ETS proposed prediction that GRE scores are valid predictors of first year graduate GPA was supported by the findings from the present study; however, for doctoral students, the proposed prediction was only partially supported. Regression and correlational analyses indicated that UGPA was the variable that consistently predicted all three success measures for both degree levels. The hierarchical multiple linear and logistic regression analyses indicated that at master’s degree level, White students with higher GRE Quantitative Reasoning Test scores were more likely to attain a degree than Asian Americans, while International students with higher UGPA were more likely to attain a degree than White students. The relationships between the three predictors and the three success measures were not significantly different between men and women for either degree level. Findings have implications both for practice and research. They will provide graduate school administrators with institution-specific validity data for UGPA and the GRE scores, which can be referenced in making admission decisions, while they will provide empirical and professionally defensible evidence to support the current practice of using UGPA and GRE scores for admission considerations. In addition, new evidence relating to differential predictions will be useful as a resource reference for future GRE validation researchers.

Disentangling patient and public involvement in healthcare decisions:why the difference matters

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.

Memory for public events in mild cognitive impairment and Alzheimer’s disease : the importance of rehearsal

Ribot’s law refers to the better preservation of remote memories compared with recent ones that presumably characterizes retrograde amnesia. Even if Ribot-type temporal gradient has been extensively studied in retrograde amnesia, particularly in Alzheimer’s disease (AD), this pattern has not been consistently found. One explanation for these results may be that rehearsal frequency rather than remoteness accounts for the better preservation of these memories. Thus, the aim of present study was to address this question by studying retrograde semantic memory in subjects with amnestic mild cognitive impairment (aMCI) (n = 20), mild AD (n = 20) and in healthy older controls (HC; n = 19). In order to evaluate the impact of repetition as well as the impact of remoteness, we used a test assessing memory for enduring and transient public events that occurred in the recent and remote past. Results show no clear temporal gradient across time periods (1960–1975; 1976–1990; 1991–2005; 2006–2011), but a better performance was observed in all three groups for enduring compared with transient events. Moreover, although deficits were globally found in both patients groups compared with HC, more specific analyses revealed that aMCI patients were only impaired on transient events while AD patients were impaired on both transient and enduring events. Exploratory analyses also revealed a tendency suggesting preservation of remote transient events in aMCI. These findings are discussed with regards to memory consolidation models.

New methodologies for risk assessment of GMOs: an experiment of public consultation in Brazil.

2008

Let the children (and young people) play-where, how, why?

This paper reports on current research work with children and young people on the importance of public and private space for good health, wellbeing, social, educational and developmental outcomes. In many urban locations in Australia and elsewhere, public space is under attack from developers and attempts by authorities to control public space (Watson 2006). Private space in the home and garden-backyard is also under attack from development densification and trends towards bigger houses on smaller plots of land where gardens disappear altogether or a postage stamp remains (Gleeson and Sipe 2006). At the same time public policy advocates the benefits of outdoor exercise, set alongside fears about using public space exacerbated by notions of ‘stranger danger’ and control measures such as child and youth ‘curfews’. In this increasingly complex context, it is important to discover what children and young people value and need most in using private (home) and public space. In conjunction with the University of Otago, New Zealand, children and young people are consulted to discover how they use public space in parks and shopping centres and home space and the issues encountered and their proposals for improvement, to better inform policy debate, planning and formulation (ARACY 2009).

Potencialidades da arte pública relacional na arte/educação:práticas da cidade como sala de aula

Tese de doutoramento, Belas-Artes (Educação Artística), Universidade de Lisboa, Faculdade de Belas-Artes, 2014

Landmarks of Canada : What art has done for Canadian history; a guide to the J. Ross Robertson historical collection in the Public reference library, Toronto, Canada. This catalogue of the collection covers three thousand seven hundred illustrations and includes originals and reproductions in every form of art of all known pictures in connection with Canadian history from the landing of Wolfe at Louisburg in 1758 to the present time /

Includes brief biographical sketches of the subjects of the portraits in the collection.

Reciprocity : where art meets the community : action research in response to artistic encounters and relationships

This practice-led research project examines some of the factors and issues facing artists working in the public domain who wish to engage with the community as audience. Using the methodology of action research, the three major creative projects in this study use art as a socio-political tool with the aim of providing an effective vehicle for broadening awareness, understanding forms of social protest and increasing tolerance for diversity. The three projects: Floodline November 7, 2004, Look in, Look out, and The Urban Terrorist Project, dealt with issues of marginalisation of communities, audiences and graffiti artists respectively. The artist/researcher is outlined as both creator and collaborator in the work. Processes included ephemeral elements, such as temporary installation and performance, as well as interactive elements that encouraged direct audience involvement as part of the work. In addition to the roles of creator and collaborator, both of which included audience as well as artist, the presence of an outside entity was evident. Whether local, legal authorities or prevailing attitudes, outside entities had an unavoidable impact on the processes and outcomes of the work. Each project elicited a range of responses from their respective audiences; however, the overarching concept of reciprocity was seen to be the crucial factor in conception, artistic methods and outcomes.

Theoretical critique of the work of art : co-producers in research

The ways in which the "traditional" tension between words and artwork can be perceived has huge implications for understanding the relationship between critical or theoretical interpretation, art and practice, and research. Within the practice-led PhD this can generate a strange sense of disjuncture for the artist-researcher particularly when engaged in writing the exegesis. This paper aims to explore this tension through an introductory investigation of the work of the philosopher Andrew Benjamin. For Benjamin criticism completes the work of art. Criticism is, with the artwork, at the centre of our experience and theoretical understanding of art – in this way the work of art and criticism are co-productive. The reality of this co-productivity can be seen in three related articles on the work of American painter Marcia Hafif. In each of these articles there are critical negotiations of just how the work of art operates as art and theoretically, within the field of art. This focus has important ramifications for the writing and reading of the exegesis within the practice-led research higher degree. By including art as a significant part of the research reporting process the artist-researcher is also staking a claim as to the critical value of their work. Rather than resisting the tension between word and artwork the practice-led artist-researcher need to embrace the co-productive nature of critical word and creative work to more completely articulate their practice and its significance as research. The ideal venue and opportunity for this is the exegesis.

Designing and evaluating mobile multimedia user experiences in public urban places : Making sense of the field

The majority of the world’s population now lives in cities (United Nations, 2008) resulting in an urban densification requiring people to live in closer proximity and share urban infrastructure such as streets, public transport, and parks within cities. However, “physical closeness does not mean social closeness” (Wellman, 2001, p. 234). Whereas it is a common practice to greet and chat with people you cross paths with in smaller villages, urban life is mainly anonymous and does not automatically come with a sense of community per se. Wellman (2001, p. 228) defines community “as networks of interpersonal ties that provide sociability, support, information, a sense of belonging and social identity.” While on the move or during leisure time, urban dwellers use their interactive information communication technology (ICT) devices to connect to their spatially distributed community while in an anonymous space. Putnam (1995) argues that available technology privatises and individualises the leisure time of urban dwellers. Furthermore, ICT is sometimes used to build a “cocoon” while in public to avoid direct contact with collocated people (Mainwaring et al., 2005; Bassoli et al., 2007; Crawford, 2008). Instead of using ICT devices to seclude oneself from the surrounding urban environment and the collocated people within, such devices could also be utilised to engage urban dwellers more with the urban environment and the urban dwellers within. Urban sociologists found that “what attracts people most, it would appear, is other people” (Whyte, 1980, p. 19) and “people and human activity are the greatest object of attention and interest” (Gehl, 1987, p. 31). On the other hand, sociologist Erving Goffman describes the concept of civil inattention, acknowledging strangers’ presence while in public but not interacting with them (Goffman, 1966). With this in mind, it appears that there is a contradiction between how people are using ICT in urban public places and for what reasons and how people use public urban places and how they behave and react to other collocated people. On the other hand there is an opportunity to employ ICT to create and influence experiences of people collocated in public urban places. The widespread use of location aware mobile devices equipped with Internet access is creating networked localities, a digital layer of geo-coded information on top of the physical world (Gordon & de Souza e Silva, 2011). Foursquare.com is an example of a location based 118 Mobile Multimedia – User and Technology Perspectives social network (LBSN) that enables urban dwellers to virtually check-in into places at which they are physically present in an urban space. Users compete over ‘mayorships’ of places with Foursquare friends as well as strangers and can share recommendations about the space. The research field of Urban Informatics is interested in these kinds of digital urban multimedia augmentations and how such augmentations, mediated through technology, can create or influence the UX of public urban places. “Urban informatics is the study, design, and practice of urban experiences across different urban contexts that are created by new opportunities of real-time, ubiquitous technology and the augmentation that mediates the physical and digital layers of people networks and urban infrastructures” (Foth et al., 2011, p. 4). One possibility to augment the urban space is to enable citizens to digitally interact with spaces and urban dwellers collocated in the past, present, and future. “Adding digital layer to the existing physical and social layers could facilitate new forms of interaction that reshape urban life” (Kjeldskov & Paay, 2006, p. 60). This methodological chapter investigates how the design of UX through such digital placebased mobile multimedia augmentations can be guided and evaluated. First, we describe three different applications that aim to create and influence the urban UX through mobile mediated interactions. Based on a review of literature, we describe how our integrated framework for designing and evaluating urban informatics experiences has been constructed. We conclude the chapter with a reflective discussion on the proposed framework.

Chaos and creativity of play : designing emotional engagement in public spaces

How do we create strong urban narratives? How do we create affection for our cities? Play, an essential part of any species' biological existence and development, can often be perceived as chaotic and derogatory to social and spatial order. Play is also often perceived as a creative force which generates social and spatial value. This paper looks at the design approaches to both chaotic and creative perceptions of publics at play in urban space. Commonly, Urban and Architectural Design constitutes reactive management of perceived chaos, which derogatorily effects our sensory and emotional engagement with space. Alternatively, Urban and Architectural Design can appeal to the creativity of play, by encouraging unsolicited novelty that is vital to strong experiential narratives in the city and iterating environments that encourage the emergence of physical, emotional and cultural invention. These perceptions of chaos and creativity affect the design methodology of professional practice. Tested through the exciting vehicle of Parkour as urban narrative, the constraints and opportunities of both approaches are presented.