["For us, as 'patients/users', the essential point remains the respect of the person"]. / « Pour nous "usagers patients", le point essentiel reste le respect de la personne ¼.

The first organisation to bring together the users of care in the history of the speciality, the French National Federation of Patient Associations in Psychiatry has always campaigned for the respect of users' freedom of movement. Despite the progress made in terms of legislation, the federation presents a mixed picture. For Claude Filkenstein, its president, there remains a long way to go, notably in the field of the culture of psychiatric care. In her opinion, training should be a major advantage.

The legitimacy of vaccine critics: what is left after the autism hypothesis?

The last dozen years have seen a massive transnational mobilization of the legal, political, and research communities in response to the worrisome hypothesis that vaccines could have a link to childhood autism and other developmental conditions. Vaccine critics, some already organized and some composed of newly galvanized parents, developed an alternate world of internally legitimating studies, blogs, conferences, publications, and spokespeople to affirm a connection. When the consensus turned against the autism hypothesis, these structures and a committed membership base unified all the organizations in resistance. This article examines the relationship between mobilization based on science and the trajectory of legitimacy vaccine criticism has taken. I argue that vaccine critics have run up against the limits of legitimate scientific argument and are now in the curious position of both doubling down on credibility-depleting stances and innovating new and possibly resonant formulations.

Industry funding of patient and health consumer organisations: systematic review with meta-analysis.

OBJECTIVE: To investigate pharmaceutical or medical device industry funding of patient groups. DESIGN: Systematic review with meta-analysis. DATA SOURCES: Ovid Medline, Embase, Web of Science, Scopus, and Google Scholar from inception to January 2018; reference lists of eligible studies and experts in the field. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Observational studies including cross sectional, cohort, case-control, interrupted time series, and before-after studies of patient groups reporting at least one of the following outcomes: prevalence of industry funding; proportion of industry funded patient groups that disclosed information about this funding; and association between industry funding and organisational positions on health and policy issues. Studies were included irrespective of language or publication type. REVIEW METHODS: Reviewers carried out duplicate independent data extraction and assessment of study quality. An amended version of the checklist for prevalence studies developed by the Joanna Briggs Institute was used to assess study quality. A DerSimonian-Laird estimate of single proportions with Freeman-Tukey arcsine transformation was used for meta-analyses of prevalence. GRADE (Grading of Recommendations Assessment, Development, and Evaluation) was used to assess the quality of the evidence for each outcome. RESULTS: 26 cross sectional studies met the inclusion criteria. Of these, 15 studies estimated the prevalence of industry funding, which ranged from 20% (12/61) to 83% (86/104). Among patient organisations that received industry funding, 27% (175/642; 95% confidence interval 24% to 31%) disclosed this information on their websites. In submissions to consultations, two studies showed very different disclosure rates (0% and 91%), which appeared to reflect differences in the relevant government agency's disclosure requirements. Prevalence estimates of organisational policies that govern corporate sponsorship ranged from 2% (2/125) to 64% (175/274). Four studies analysed the relationship between industry funding and organisational positions on a range of highly controversial issues. Industry funded groups generally supported sponsors' interests. CONCLUSION: In general, industry funding of patient groups seems to be common, with prevalence estimates ranging from 20% to 83%. Few patient groups have policies that govern corporate sponsorship. Transparency about corporate funding is also inadequate. Among the few studies that examined associations between industry funding and organisational positions, industry funded groups tended to have positions favourable to the sponsor. Patient groups have an important role in advocacy, education, and research, therefore strategies are needed to prevent biases that could favour the interests of sponsors above those of the public. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42017079265.

"Be receptive to the good earth": health, nature, and labor in countercultural back-to-the-land settlements.

Modern environmental activists unified behind calls for a change in how humans understood their relationships with nature. Yet they approached their concerns through a variety of historical lenses. Countering arguments that suggest environmentalism had its deepest roots in outdoor leisure, the countercultural back-to-the-land movement turned to a markedly American practice of pastoral mythmaking that held rural life and labor as counter to the urban-industrial condition. Counterculturalists relied specifically on notions of simple work in rural collective endeavors as the means to producing a healthy body and environment. Yet the individuals who went back-to-the-land often failed to remedy conflicts that arose as they attempted to abandon American consumer practices and take up a "primitive" and down-to-early pastoral existence. Contact with rural nature time and again translated to physical maladies, impoverishment, and community clashes in many rural countercultural communes. As the back-to-the-land encounter faded, the greater movement's ethos did not disappear. Counterculturalists used the consumption of nature through rural labor as a fundamental idea in a growing cooperative food movement. The back-to-the-land belief in the connection between healthy bodies, environments, and a collective identity helped to expand a new form of consumer environmentalism.

Unlicensed residential programs: the next challenge in protecting youth.

Over the past decade in the United States, the number of private residential facilities for youth has grown exponentially, and many are neither licensed as mental health programs by states, nor accredited by respected national accrediting organizations. The Alliance for the Safe, Therapeutic and Appropriate use of Residential Treatment (A START) is a multi-disciplinary group of mental health professionals and advocates that formed in response to rising concerns about reports from youth, families and journalists describing mistreatment in a number of the unregulated programs. This article summarizes the information gathered by A START regarding unregulated facilities. It provides an overview of common program features, marketing strategies and transportation options. It describes the range of mistreatment and abuse experienced by youth and families, including harsh discipline, inappropriate seclusion and restraint, substandard psychotherapeutic interventions, medical and nutritional neglect, rights violations and death. It reviews the licensing, regulatory and accrediting mechanisms associated with the protection of youth in residential programs, or the lack thereof. Finally, it outlines policy implications and provides recommendations for the protection of youth and families who pursue residential treatment.

Access to essential drugs in 11 Brazilian cities: a community-based evaluation and action method.

The Brazilian Institute for Defense of Consumers' (IDEC) health and legal professionals gathered with partner associations and researchers from the University of Brasilia shaped this study to develop and apply simple methods for community and consumer organizations to monitor the availability of essential drugs for primary care in their local public health services. A cross-sectional study was conducted in 11 Brazilian cities. The instrument gave priority to the feasibility of use by community organizations over statistically representative designs. It also worked from the assumption that all Health Centers should stock the drugs recommended for ambulatory care on Brazil's national list of essential drugs, in agreement to federal legislation. The instrument was found to be feasible for use by the participating organizations, and its utilization revealed a picture of severe deficiency of essential medicines in the Brazilian public health system, expressed as an overall availability of only 55.4% of the 61 drugs investigated. Models for legal action in support of individual and community access to essential drugs were developed by IDEC's legal staff to assist community organization in following up the results with an action program. These models were made available on the organization's web-site and widely disseminated nationally.

A citizens' AIDS Task Force: overcoming obstacles.

This article analyzes the experience of a state-wide Task Force on AIDS using grassroots techniques to construct policy responsive to the needs of people living with HIV. The four primary obstacles to effective policy making were the need (1) to include disenfranchised groups; (2) to avoid the domination of governmental bureaucracy so that community-based organizations could offer solutions, as well as services; (3) to overcome resistance to anonymous testing; and (4) to reach "hard to reach" populations. Task Force members' perspectives colored what were deemed appropriate policies. Members tended to polarize into two groups: those community-based groups and individuals who focused on the needs of people with HIV on one side, and on the other side, more institutional players who wanted to identify and isolate "HIV carriers." The article closes by analyzing the resulting HIV Omnibus Bill. Those who focused on the needs of people with HIV seized the opportunity to draft and successfully pass an omnibus bill through the Arizona Legislature. This success demonstrates that highly organized communities can affect policy making, even to the extent that it offsets more institutionalized power.

Priorities of legislatively active veteran services organizations: a content analysis and review for health promotion initiatives.

Military and Veterans Service Organizations (MVSOs) have a unique opportunity to influence legislation and advocate for the interests of their members. However, little is known about what legislative priorities MVSOs see as important. Understanding the legislative priorities of MVSOs can inform efforts by health scientists to promote policy and laws designed to improve the health of our nation's veterans. Using a mixed methods approach, we conducted a thematic analysis of legislative priorities MVSOs promote with their legislative agendas. Most commonly, MVSOs addressed issues related to disability evaluations and ratings with the Veterans Administration and access to Veterans Administration services. Other common themes identified as priorities include benefits such as retirement, education, housing assistance for veterans, and TRICARE benefits. Findings highlight the broad range of topics MVSOs identify as legislative priorities as well as some health issues that receive relatively limited attention.

The role of patients' organizations in cross-border reproductive care.

This article provides an overview of cross-border reproductive care from a patient perspective. It outlines motives for seeking reproductive care outside patients' home countries or in other jurisdictions of their home country, describes the role of patients' organizations in general, and concludes by indicating potentials for collaboration between professionals' and patients' organizations.

From a social issue to policy: Social work's advocacy for the rights of donor conceived people to genetic origins information in the United Kingdom.

This paper outlines a 22 year campaign to introduce openness into the arena of donor conception in the UK. It identifies key aspects of the development of an advocacy based approach to such work and argues that social work values and principles can prove key to identifying structural inequalities which are not necessarily based in socio-economic disadvantage. Donor conceived people may find themselves in families which enjoy material privilege but whose exposure to a legislative framework and dominant professional cultures within the treatment centres encourages secrecy around genetic origins. Social workers' experience of adoption and family work leads them to recognise the danger of such secrets within families. Turning such social issues into policy changes requires vision, strategic long term advocacy and partnership with those directly affected.