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.

Garantías de la legislación para evitar adiccionesen los medicamentos / Legislation's guarantees to prevent addictionsin medicinal products

En la actualidad, las nuevas tecnologías de la información y comunicación (TICs) se aplican a distintos ámbitos, entre ellos, el farmacéutico. El acceso por internet a medicamentos y productos sanitarios es una realidad. El paciente que necesita el medicamento para su curación o mejora de su salud, es considerado para la legislación como consumidor, consume un producto y de ahí la aplicación de una normativa múltiple que está relacionada con su protección. Sin embargo, otra perspectiva es el medicamento como droga para determinadas patologías y la generación de una adicción, en los casos de consumo incorrecto o en combinación con otras sustancias no permitidas. El propósito del presente trabajo es analizar cuáles son los instrumentos de garantía que establece la normativa para el paciente-consumidor tras la reciente aprobación del Real Decreto Legislativo 1/2015, de 24 de julio, por el que se aprueba el texto refundido de la Ley de garantías y uso racional de los medicamentos y productos sanitarios, así como las medidas para evitar la adicción y la protección que otorga la legislación para evitar dicho consumo inadecuado

The new information and communication technologies (Tics) are applied today in differ-ent areas, including the pharmaceutical field. Access over the Internet to medicines and sanitary products is a reality. The patient who needs the medicine for his/her treatment or improving his/her health, is considered as far as legislation is concerned as a consumer, consumes a product and therefore entails the application of a multiple regulation that is related to his/her protection. Nevertheless, from another perspective the medicinal prod-uct can be seen as a drug for certain pathologies and the generation of an addiction, in the cases of incorrect consumption or in combination with other, forbidden substances. The intention of the present paper is to analyze what guarantee instruments are established by the regulation for the patient-consumer after the recent approval of Royal Legislative Decree 1/2015, of 24 July enacting the consolidated restated text of the Spanish Act on guarantees and rational use of medicines and healthcare products, as well as the mea-sures to avoid addiction and the protection that is granted by legislation to prevent the aforementioned improper consumption

["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.

Los métodos alternativos en el estudio de la seguridad de cosméticos / Alternative methods in the study of the safety of cosmetics

El Reglamento 1223/2009 establece las normas que deben cumplir todos los productos cosméticos comercializados en Europa, con objeto de velar por el funcionamiento del mercado interior y lograr un elevado nivel de protección de la salud humana garantizando el uso de métodos alternativos que no impliquen la utilización de animales. El Laboratorio Europeo de Referencia para las Alternativas a la Experimentación con Animales (EURL-EURL- ECVAM) es el laboratorio de referencia en Europa encargado de validar los métodos alternativos. Posteriormente pueden ser homologados por la Organización de Cooperación y Desarrollo Económico (OCDE). Por otro lado, el Comité Científico de Seguridad de los Consumidores (SCCS) asesora a la Comisión sobre todos los temas relacionados con la seguridad de los cosméticos. En esta revisión se detalla una relación de métodos alternativos necesarios para evaluar la seguridad de los ingredientes cosméticos así como los métodos usados y sus limitaciones (AU)

Regulation 1223/2009 apply to all cosmetic products marketed in Europe in order to ensure the internal market and achieve a high level of protection of human health by ensuring the use of alternative methods not involving the use of animals. The European Reference Laboratory for Alternatives to Animal Testing (EURL- EURL-ECVAM) is the European reference laboratory responsible for validating alternative methods. They can also be approved by the Organization for Economic Cooperation and Development (OECD). In addition, the Scientific Committee on Consumer Safety (SCCS) advises the EU Commission on all issues related to cosmetic safety. In this review, alternative methods needed to assess the safety of cosmetic ingredients and the methods used and their limitations are outlined (AU)

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 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.

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.

Consumer views of community pharmacy services in Bangalore city, India / Visión de los consumidores de los servicios de farmacia comunitaria en Bangalore City, India

Objective: The opinion about pharmacy services was studied using an instrument which measured satisfaction with pharmacy services. The main focus of the instrument was to assess patients’ opinion and expectation of the present pharmacy services. Method: The instrument contained 20 items, which were grouped based on their similarity into eight dimensions, namely, General satisfaction, Interpersonal Skill, Evaluation, Gathering non medical information, Trust, Helping Patients, Explanation, and Finance. Chance random sampling was done and the participants were the general public above the age of 18 years. The main outcome measure was to study participants’ opinion regarding the current and desired pharmacy services. Descriptive statistics are presented for the satisfaction dimension score. The level of satisfaction with the different dimensions was compared across the different demographic characteristics. Result: The study results revealed significant difference in the General satisfaction and Interpersonal skill amongst the gender. Significant difference was seen in the Helping patients, Evaluation and Explanation skill among the various age groups. Education background showed significant difference in evaluation, Gathering-nonmedical information, Helping patients and Explanation skills of the pharmacist. There was an overall satisfaction dimension score of 56.83% in the current practice and 68.83% in the desired practice. Conclusion: Awareness about pharmacy service continuing education programme for practicing pharmacist will heighten the pharmacy profession in our country (AU)

Objetivo: Se estudió la opinión de los servicios de las farmacias usando un instrumento que media la satisfacción con los servicios. El principal foco del instrumento era evaluar la opinión y las expectativas de los actuales servicios de las farmacias. Método: El instrumento contenía 20 ítems, que estaban agrupados, en función de su similitud, en 8 dimensiones, específicamente, satisfacción general, habilidades interpersonales, evaluación, recogida de información no-médica, confianza, ayuda apacientes, explicación, y financieros. Se realizó un muestreo aleatorio y los participantes eran público general mayor de 18 años. La variable de resultado medida fue estudiar la opinión de los participantes en relación a los servicios actuales y los deseados de las farmacias. Se presenta la estadística descriptiva para la puntuación de la dimensión satisfacción. Se compara el nivel de satisfacción con las diferentes dimensiones con las diferentes variables demográficas. Resultados: Los resultados del estudio revelaron diferencias significativas entre los géneros en la satisfacción general y las habilidades interpersonales. También se vieron diferencias significativas entre los grupos de edad para ayuda a los pacientes, evaluación y habilidades de explicación. El nivel educativo mostró diferencias significativas en evaluación, recogida de información no-médica, ayuda a pacientes, y habilidades de explicación del farmacéutico. Hubo una puntuación de la dimensión satisfacción global de 56,83% en el ejercicio actual y de 68,83% en la práctica deseada. Conclusión: El conocimiento del programa de formación continuada de servicios farmacéuticos para farmacéuticos en ejercicio elevará la profesión farmacéutica en el país (AU)

"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.

Políticas de Salud en la Unión Europea: ¿hacia un Sistema Europeo de Salud Pública? / Health Care Policy in the European Union: towards a European system of Public Health?

Con la creación de la Unión Europea se eliminaron fronteras entre naciones y, con ellas, algunos controles que existían en materia de seguridad, salud pública, comercio y ejercicio profesional. Como res-puesta, se ha creado la Dirección General de Sanidad y Protección de Consumidores, que se encarga de establecer y coordinar políticas de implicación europea sobre estos temas, desarrollando oficinas responsables de la administración y puesta en marcha de programas específicos en salud pública. Sobresalen la lucha contra el cáncer, el tabaco, seguridad y salud ocupacional y el control de productos de consumo humano o animal, que se comercializan como tratamiento de enfermedades en la Unión Europea. Como principales logros tenemos; la reorganización ejecutiva y la tan importante recopilación, clasificación, homologación y divulgación de datos, como información asequible para gobiernos, empresas y ciudadanos. La inequidad en el acceso a los ser vicios de atención y el control de la factura sanitaria son los grandes fantasmas que acosan la sanidad mundial, y Europa no es la excepción, convirtiéndose así en los grandes retos políticos de salud de la futura Unión de los 27. En este artículo se discute el hecho de que el "laboratorio social" europeo en materia de salud pública navega por buenas aguas sin terminar de llegar a puerto

The creation of the European Union led to the elimination of borders between nations as well as some controls regarding safety, public health, commercial trade and professional practice. In response, the General Administration of Health and Consumer Protect was created.This is responsible for establishing and coordinating policies involving Europe on these subjects, developing offices responsible for administration and establishing specific public health programs.The fight against cancer, smoking, occupational health and safety and control of products for animal or human consumption, that have been sold in the European Union as treatment for diseases, stand out. Principal achievements include executive reorganization and data recompilation, classification, homologation and publication of data, and attainable information for governments, companies and citizens. Unfairness in the access to health care services and control of the health care invoices are important phantoms that harass the world and Europe is no exception.Thus, this is one of the important political challenges in health care administration of the 27 states of the future Union.This article speaks about the European "social laboratory" in public health sailing on good waters without arriving to any port

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.

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.

Aspectos legislativos generales de las políticas de seguridad alimentaria / General legal aspects of Food Safety Policies

Las distintas crisis alimentarias producidas en los últimos años en el entorno europeo han venido a poner de manifiesto la ineficacia de la legislación existente para prevenir, o al menos paliar adecuadamente las consecuencias negativas para la salud de dichas crisis. El antecedente tal vez más recordado en España hasta fechas cercanas fue el del aceite de colza, pero las vacas locas volvieron a recrear el temor de los consumidores respecto a la seguridad de los alimentos. En el presente trabajo se pretende poner de manifiesto los problemas que plantea la existencia de una legislación profusa y dispersa en materia de nutrición, especialmente en el ámbito europeo. El objetivo que se persigue es analizar las bases establecidas en el recientemente publicado Reglamento 178/2002, por el que se establecen los principios y requisitos generales de la legislación alimentaria y se crea la Autoridad Europea de Seguridad Alimentaria; pero también se pretende señalar el marco jurídico general que en materia de protección de consumidores fue establecido en nuestro País a través de la Ley General de Consumidores y Usuarios de 1984. (AU)

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.

Getting to no: how Kansas advocates derailed the Anthem steamroller.

A battle royale has taken shape in Kansas about the future of its Blue Cross and Blue Shield plan. This past February, Kansas Insurance Commissioner Kathleen Sebelius rocked the corporate health care establishment by refusing to allow Anthem Insurance Company to buy the state's independent Blue Cross and Blue Shield plan. Then in June, a state judge overturned her decision. Now the case is headed to appeals court, where Sebelius will seek to have her decision reinstated. At the heart of the legal wrangling is the unprecedented manner in which advocates have asserted consumer interests, raising issues that will persist long after the courts hand down a final ruling. States of Health looks at how consumer advocates have responded to the proposed Blues transaction, a process that has strengthened the health consumer voice in Kansas--and offers important lessons for advocates in other states as well.