Pharmaceuticals and the consumer movement: the ambivalences of 'patient power'

Consumer and patient advocacy groups (PAGs) are important participants in the politics of pharmaceuticals. Yet very little is known about the precise nature and extent of their influence. It is argued in this article that PAGs fulfil a mixed role within the health system at national and transnational levels, and that they are at times fully incorporated into economic and political power structures. Their frequent dependence on pharma industry funding is of particular concern. PAGs provide a means of direct industry interaction with the final customer, thereby partially bypassing and putting additional pressure on doctors and regulators. The article presents the case for research to establish a better empirical base for discussions about the role of PAGs within contemporary neo-liberal governance structures.

Children and the media

This entry provides an historical overview of children's media in Australia, including print, magazines, radio, television and new media. Topics canvassed included the regulation of media for children and advocacy groups in the Australian context.

Reflections on being a first generation self-advocate: belonging, social connections, and doing things that matter

Background Despite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. Methods In-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. Findings Through their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. Conclusions This study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society.

Can international human rights law accommodate bodily diversity?

This article considers recent efforts by international bodies and advocacy groups to secure the human rights of individuals with intersex variation. Identifying that these efforts are constrained by powerful assumptions about binary sex, it argues that international rights discourse looks set to regulate intersex individuals by the same protective strategies applied to the last four decades of the women's rights movement. A frank reading of legal feminist scholarship indicates several possible risks for the nascent intersex campaign. Efforts to ensure the substantive enjoyment of rights (for all) need to move beyond the constraints of a binary system in which women and sexed/sexual minorities will always be produced as other. Having argued that human rights are not contingent on biological determinants, the right to non-discrimination on the basis of sex traits is considered.

Cervical cancer services for Indigenous Women: Advocacy, Community-Based Research and Policy Change in Australia

Collaborative research undertaken in the state of Queensland, Australia, resulted in major changes in cervical cancer screening and treatment for Indigenous women. Guided by an Indigenous statewide reference group and with an Indigenous researcher playing a lead role, qualitative data were collected using interviews, focus groups, and larger community meetings; and case studies were conducted with health workers and community members from diverse rural, remote and urban communities, to explore the different cultural and structural factors affecting understanding and awareness of cervical cancer and Indigenous women's use of and access to health services for screening, diagnosis and treatment. These data were supplemented by an analysis of clinical data and health service checklists. We discuss the methodology and summarize the key social and structural factors that discourage women from presenting for screening or returning for follow-up. These include women's misunderstanding of cervical cancer screening, fear of cancer, distrust of health services, poor recall and follow-up systems, and the economic and social burden to women presenting for treatment. We describe how the research process and subsequent activities provided Indigenous women with a vehicle for their own advocacy, resulting in important policy and program changes.

The politics of NGOs : empowering marginal groups in a climate of micro-management and distrust

The role of peak NGOs in Australian civil society is considered crucial for representing marginal groups in the public and policy arena. The Howard government had particularly challenged the advocacy, coordination, information, research and policy role of peak NGOs. Instead of dealing with NGOs, the Howard government developed a 'governing through communities' process establishing new arrangements between the Federal government and local communities. It is of concern that 'governance through communities' may directly erode the values of voluntary association, broad representation of diverse groups in society and may negate non-instrumental political relations that NGOs aim to contribute to a healthy democracy. How the new Rudd government relates to peak NGOs is thus worthy of close analysis to understand what democratic role especially peak NGO's will play in Australian civil society.

Democratizing health : consumer groups in the policy process

This timely book examines the role of consumer organisations in the health policy process. In an age of shifting boundaries between state and civil society, consumer groups are potentially drivers of democratisation in the health domain. Their activities bring new dynamics to relations between service providers, the medical profession, government agencies, and other policy actors. This book is unique in comprehensively exploring the opportunities and dilemmas of this type of activism, including sometimes ambiguous partnerships between consumer groups and stakeholders such as the pharmaceutical industry. These themes are explored within an internationally comparative frameThis book examines the important role of consumer activism within health policy in different national contexts. In an age of shifting boundaries between state and civil society, consumer groups are potentially drivers of democratization in the health domain. The expert contributors explore how their activities bring new dynamics to relations between service providers, the medical profession, government agencies, and other policy actors. This book is unique in comprehensively analysing the opportunities and dilemmas of this type of activism, including ambiguous partnerships between consumer groups and stakeholders such as the pharmaceutical industry. These themes are explored within an internationally comparative framework, with case studies from various countries. work, with case studies from many countries.

Introduction : consumer groups and the democratization of health policy

This book examines the important role of consumer activism within health policy in different national contexts. In an age of shifting boundaries between state and civil society, consumer groups are potentially drivers of democratization in the health domain. The expert contributors explore how their activities bring new dynamics to relations between service providers, the medical profession, government agencies, and other policy actors. This book is unique in comprehensively analysing the opportunities and dilemmas of this type of activism, including ambiguous partnerships between consumer groups and stakeholders such as the pharmaceutical industry. These themes are explored within an internationally comparative framework, with case studies from various countries. Students and researchers in the fields of health policy and sociology, public policy and social movements will find this relevant and path-breaking book enlightening. It will also prove invaluable for participants and activists in patient and health consumer organizations.

From activism to state inclusion : health consumer groups in Australia

This book examines the important role of consumer activism within health policy in different national contexts. In an age of shifting boundaries between state and civil society, consumer groups are potentially drivers of democratization in the health domain. The expert contributors explore how their activities bring new dynamics to relations between service providers, the medical profession, government agencies, and other policy actors. This book is unique in comprehensively analysing the opportunities and dilemmas of this type of activism, including ambiguous partnerships between consumer groups and stakeholders such as the pharmaceutical industry. These themes are explored within an internationally comparative framework, with case studies from various countries. Students and researchers in the fields of health policy and sociology, public policy and social movements will find this relevant and path-breaking book enlightening. It will also prove invaluable for participants and activists in patient and health consumer organizations.

More than a reader and less than a critic: literary authority and women`s book-discussion groups

The phenomenon of women reading books collaboratively is largely invisible, and certainly under-researched. This study, based on extensive circulation figures and on a small sample of members of four Council of Adult Education reading groups in metropolitan Melbourne, argues that such groups have a reading repertoire which is seriously middlebrow, far removed from the “wish-fulfillment” or “lazy reader” stereotypes purveyed by some who would scorn such groups. The study finds that such groups are sensitively served by the institution which hosts them. While such groups do not question the aesthetic assumptions that underlie their practice, they are combative with some manifestations of the literary establishment. Their powerful preferences for contemporary Australian women's fiction and their participation in global debates via identity politics suggests they warrant closer examination, both within Australian culture, and to find out if such groups have counterparts in other cultures.

Approaches to study of three Chinese national groups.

Although numerous studies have examined the learning approaches of Chinese students, very few comparative studies have been carried out with Chinese students from different nations. The present research was designed to identify differences in study approach between Chinese university students drawn from Malaysia, Singapore, and Hong Kong.