Governing Public Health: EU Law, Regulation and Biopolitics

This book contributes towards EU studies and the growing discourse on law and public health. It uses the EU’s governance of public health as a lens through which to explore questions of legal competence and its development through policy and concrete techniques, processes and practices, risk and security, human rights and bioethics, accountability and legitimacy, democracy and citizenship, and the nature, essence and ‘future trajectory’ of the European integration project. These issues are explored first, by situating the EU's public health strategy within the overarching architecture of governance and subsequently by examining its operationalisation in relation to the key public health problems of cancer, HIV/AIDS and pandemic planning.

The book argues that the centrality and valorisation of scientific and technical knowledge and expertise in the EU's risk-based governance means that citizen participation in decision-making is largely marginalised and underdeveloped – and that this must change if public health and the quality, accountability and legitimacy of EU governance and its regulation are to be improved. Subsequently the book goes on to argue that the legitimating discourses of ethics and human rights, and the developing notion of EU (supra-)stewardship responsibility, can help to highlight the normative dimensions of governance and its interventions in public health. These discourses and dimensions provide openings and possibilities for citizens to power ‘technologies of participation’ and contribute important supplementary knowledge to decision-making.

Gender and Politics in Northern Ireland: the representation gap revisited

This article examines the nature of gender politics in Northern Ireland since the 1998 Good Friday/Belfast Agreement. Taking gender justice as a normative democratic framework, the article argues that despite the promise of women's equal participation in public and political life written into the Agreement, parties have delivered varied responses to integrating women, women's interests and perspectives into politics and policy platforms. This contrasts with general patterns supporting women's increased participation in social and political life. The article discusses women's descriptive and substantive representation through electoral outcomes and party manifestos, using the demands of successive women's manifestos as a benchmark. It concludes that while parties have given less recognition and inclusion to women than one might have expected in a new political context, the push for democratic accountability will ensure that gender politics will continue to have a place on the political agenda for some time to come.

Public Participation in Area-based Urban Regeneration Programmes

This paper reports the findings of research into the representation of local interests in area-based urban regeneration programmes in Northern Ireland and the Republic of Ireland. The two case studies are contextualised by a review of the promotion of public participation in urban regeneration in both parts of Ireland and theorised as a site of interaction between state agencies and civil society. It is argued that the practice of public participation is a hegemonic project, which, within urban regeneration, is operationalised through partnership structures. The paper concludes that many factors from within and outside the case study programmes affected their consultation processes. Therefore the design and implementation of regeneration programmes should be undertaken in the context of an understanding of the relationship between the state and civil society in the empirical case.

Evaluation of the Q-method as a method of public participation in the selection of sustainable development indicators

The complexity of sustainable development means that it is often difficult to evaluate and communicate the concept effectively. One standard method to reduce complexity and improve Communication, while maintaining scientific objectivity, is to use selected indicators. The aim of this paper is to describe and evaluate a process Of public participation in the selection of sustainable development indicators that utilised the Q-method for discourse analysis. The Q-method was Utilised to combine public opinion with technical expertise to create a list of technically robust indicators that would be relevant to the public, The method comprises statement collection, statement analysis, Q-sorts and Q-sort analysis. The results of the Q-method generated a list of statements for which a preliminary list of indicators was then developed by a team of experts from the fields of environmental science, sustainable development and Psychology. Subsequently members of the public evaluated the preliminary list of indicators, to select a final list of indicators that were both technically sound and incorporated the views of the public. The Utilisation of the Q-method in this process was evaluated using previously published criteria. The application of the Q-method in this context needs to be considered not only by the quality of the indicators developed, but also from the perspective of the benefit of the process to the participants. it was concluded that the Q-method provided an effective framework for public participation in the selection of indicators as it allowed the public to discuss Sustainable development in familiar language and in the context of their daily lives. By combining this information with expert input, a list of technically robust indicators that resonate with the public was developed. The results demonstrated that many citizens are not aware Of Sustainable development, and if it is to be successfully communicated to them, then indicators and policy need to be couched in terms familiar and relevant to citizen and communities. (C) 2009 Elsevier Ltd. All rights reserved.

Addressing inequalities in physical activity participation: Implications for public health policy and practice

OBJECTIVE: To investigate the characteristics of those doing no moderate-vigorous physical activity (MVPA) (0days/week), some MVPA (1-4days/week) and sufficient MVPA (≥5days/week) to meet the guidelines in order to effectively develop and target PA interventions to address inequalities in participation.

METHOD: A population survey (2010/2011) of 4653 UK adults provided data on PA and socio-demographic characteristics. An ordered logit model investigated the covariates of 1) participating in no PA, 2) participating in some PA, and 3) meeting the PA guidelines. Model predictions were derived for stereotypical subgroups to highlight important policy and practice implications.

RESULTS: Mean age of participants was 45years old (95% CI 44.51, 45.58) and 42% were male. Probability forecasting showed that males older than 55years of age (probability=0.20; 95% CI 0.11, 0.28), and both males (probability=0.31; 95% CI 0.17, 0.45) and females (probability=0.38; 95% CI 0.27, 0.50) who report poor health are significantly more likely to do no PA.

CONCLUSIONS: Understanding the characteristics of those doing no MVPA and some MVPA could help develop population-level interventions targeting those most in need. Findings suggest that interventions are needed to target older adults, particularly males, and those who report poor health.

Reframing EU Public Health Governance:From Risk to Citizenship and Participation

Risk is the dominant frame for the European Union’s growing albeit often overlooked public health governance. The starting point for this chapter is the distortion of public health priorities by and within this frame. I argue that existing efforts to identify, underline and tackle the distortions can be strengthened by reframing governance as a matter of citizenship so as to develop citizen participation in decision making.

The Right to Participation of Minorities and Irish Travellers

The idea of participation is becoming increasingly important in international human rights law and recent political and constitutional theory. There is an emerging international law right of minorities to participate in public life. There are many problems though with putting this right into practice. It is not enough to offer formal opportunities for representation or even to facilitate more participatory processes. This article explores how participation is more easily proclaimed than practised by examining the position of one ethnic minority, Travellers, in a liberal democracy, Ireland. While there are many formal opportunities for participation, these do not necessarily result in effective participation on a basis of equality, and may still result in decisions which fail to consider the Traveller culture and identity. Travellers still suffer from an imbalance of power in these arrangements. There are hopeful avenues to pursue in improving participation, the role of civil society and the use of a dialogue between non-governmental organisations and international organisations to put pressure on a national government, including special representation to offset the disadvantages of traditional representative democracy and emphasising the role of special parliamentary bodies; and the need to address the politics of recognition so as to strengthen the hand of disadvantaged groups such as Travellers.

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

Background: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. Methods: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. Results: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. Conclusion: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias

Frequency of participation of 8-12 year old children with cerebral palsy: a multi-centre cross sectional European study

Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services.

We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation.

We undertook a multi-centre, population-based study in children with and without cerebral palsy. Working from the Life-H instrument, we developed a questionnaire to capture frequency of participation in 8–12-year-old children. In nine regions of seven European countries, parents of 813 children with cerebral palsy and 2939 children from the general populations completed the questionnaire.

Frequency of participation for each question was dichotomised about the median; multivariable logistic regressions were carried out.

In the general population, frequency of participation varied between countries. Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population. There was regional variation in the domains with reduced participation and in the magnitude of the differences. We discuss how this regional variation might be explained by the different environments in which children live. Attending a special school or class was not associated with further reduction in participation in most areas of everyday life.