Patients' organizations in rare diseases and involvement in drug information: Illustrations with LMC France, the French Association of Chronic Myeloid leukemia.

There are few areas in medicine in which patient-parent advocacy groups play such a central and prominent role as in the field of rare diseases. As illustrated by the French Association of Chronic Myeloid Leukemia (LMC France), its contribution is not only focused on its role as participants or key informant related to clinical studies but also on drug information and drug safety. The discovery of tyrosine kinase inhibitors against the BCR-ABL1 oncogenic fusion protein has revolutionized the management of CML, becoming a chronic illness rather than a life-threatening disease. Because ensuring ongoing well-being requires some knowledge, LMC France has built, in synergy with healthcare professionals from its scientific council, a CML-specific, patient-friendly knowledge base including resources and knowledge related to drug information (drug development, generics, pharmacovigilance) and drug safety using several educational tools such as videos, CML support, and CML drug sheets. To disseminate more largely, an e-university learning for regional key informants from LMC France and also CML patients and their caregivers was launched, including a large resources related to drug information and drug safety in synergy with hematologists and clinical pharmacologists.

Papel de las organizaciones de consumidores en la alfabetización alimentaria de la población / The role of consumer organisations in nutritional education

Objetivos: conocer mejor al consumidor para poder informarle, mejorar su protección y fomentar su responsabilidad, incidiendo en el papel de las organizaciones de consumidores en la alfabetización alimentaria de la población española. Métodos: más de 2.000 familias de todas las comunidades autónomas participaron en la Encuesta sobre hábitos de consumo 2016, cuyo objetivo era conocer mejor el perfil del nuevo consumidor español y fomentar el consumo responsable. Se analizan los hábitos de consumo, los factores que influyen en la compra y el nivel de información de consumidores. Resultados: el 65% de los consumidores elige el supermercado como lugar de compra habitual; la compra de productos frescos se impone al resto. Los datos reflejan hábitos alimentarios de los ciudadanos menos saludables de lo recomendable y un bajo conocimiento sobre alimentos libres de alérgenos, ecológicos o transgénicos. El 75% reconoce que la situación económica le ha obligado a cambiar en parte sus hábitos de consumo y alimentación. Lo más valorado a la hora de seleccionar un producto son la calidad y el precio, factores que junto con la proximidad del establecimiento condicionan la elección del lugar de compra. El 71% de los consumidores dicen buscar información sobre productos antes de comprarlos y encontrarla en el etiquetado. Valoran la información sobre caducidad, ingredientes, precio, lugar de origen e información nutricional. Solo el 71% diferencia entre fecha de caducidad y de consumo preferente. Conclusiones: para una asociación de consumidores, la educación nutricional no solo debe contemplar la difusión de información acerca de alimentos y nutrientes, sino también proporcionar herramientas para saber qué hacer y cómo actuar para mejorar la nutrición, creando entornos que faciliten buenas opciones alimentarias y capacidades que permitan a individuos, instituciones y empresas comprometerse con la adopción de prácticas más saludables

Objectives: to gain a better understanding about consumers in order to be able to inform them, improve their protection and promote their responsibility, emphasizing the role of consumer organizations in improving the food literacy of the Spanish population. Methods: more than 2,000 families from all the Autonomous Regions of Spain participated in the "Survey on consumer habits 2016", which aimed to better understand the profile of the new Spanish consumer and encourage responsible consumption. We analysed consumer habits, factors that influence purchase and level of information of consumers. Results: some 65% of consumers choose supermarkets as their usual place of purchase; the purchase of fresh products is imposed on the rest. The data reflect dietary habits of citizens are less healthy than recommended and little knowledge about food allergen-free, ecological or transgenic foods. About 75% acknowledge that the economic situation forced them to change partially consumption and food habits. When selecting a product, people value the most quality and price, factors that together with the proximity of the point-of-purchase influence the choice of place of purchase. 71% of consumers say they look for information about products before buying them and find it on labels. They value information on expiration date, ingredients, price, place of origin and nutritional information. Only 71% difference between expiration date and preferential consumption. Conclusions: for a consumer association, nutrition education should not only contemplate the dissemination of information about food and nutrients, but also provide tools to know what to do and how to act to improve nutrition, creating environments that provide good food options and capabilities that allow to individuals, institutions and companies to commit to adopting healthier practices

[The role of consumer organisations in nutritional education]. / Papel de las organizaciones de consumidores en la alfabetización alimentaria de la población.

OBJECTIVES: to gain a better understanding about consumers in order to be able to inform them, improve their protection and promote their responsibility, emphasizing the role of consumer organizations in improving the food literacy of the Spanish population. METHODS: more than 2,000 families from all the Autonomous Regions of Spain participated in the "Survey on consumer habits 2016", which aimed to better understand the profile of the new Spanish consumer and encourage responsible consumption. We analysed consumer habits, factors that influence purchase and level of information of consumers. RESULTS: some 65% of consumers choose supermarkets as their usual place of purchase; the purchase of fresh products is imposed on the rest. The data reflect dietary habits of citizens are less healthy than recommended and little knowledge about food allergen-free, ecological or transgenic foods. About 75% acknowledge that the economic situation forced them to change partially consumption and food habits. When selecting a product, people value the most quality and price, factors that together with the proximity of the point-of-purchase influence the choice of place of purchase. 71% of consumers say they look for information about products before buying them and find it on labels. They value information on expiration date, ingredients, price, place of origin and nutritional information. Only 71% difference between expiration date and preferential consumption. CONCLUSIONS: for a consumer association, nutrition education should not only contemplate the dissemination of information about food and nutrients, but also provide tools to know what to do and how to act to improve nutrition, creating environments that provide good food options and capabilities that allow to individuals, institutions and companies to commit to adopting healthier practices.

Objetivos: conocer mejor al consumidor para poder informarle, mejorar su protección y fomentar su responsabilidad, incidiendo en el papel de las organizaciones de consumidores en la alfabetización alimentaria de la población española. Métodos: más de 2.000 familias de todas las comunidades autónomas participaron en la Encuesta sobre hábitos de consumo 2016, cuyo objetivo era conocer mejor el perfil del nuevo consumidor español y fomentar el consumo responsable. Se analizan los hábitos de consumo, los factores que influyen en la compra y el nivel de información de consumidores. Resultados: el 65% de los consumidores elige el supermercado como lugar de compra habitual; la compra de productos frescos se impone al resto. Los datos reflejan hábitos alimentarios de los ciudadanos menos saludables de lo recomendable y un bajo conocimiento sobre alimentos libres de alérgenos, ecológicos o transgénicos. El 75% reconoce que la situación económica le ha obligado a cambiar en parte sus hábitos de consumo y alimentación. Lo más valorado a la hora de seleccionar un producto son la calidad y el precio, factores que junto con la proximidad del establecimiento condicionan la elección del lugar de compra. El 71% de los consumidores dicen buscar información sobre productos antes de comprarlos y encontrarla en el etiquetado. Valoran la información sobre caducidad, ingredientes, precio, lugar de origen e información nutricional. Solo el 71% diferencia entre fecha de caducidad y de consumo preferente. Conclusiones: para una asociación de consumidores, la educación nutricional no solo debe contemplar la difusión de información acerca de alimentos y nutrientes, sino también proporcionar herramientas para saber qué hacer y cómo actuar para mejorar la nutrición, creando entornos que faciliten buenas opciones alimentarias y capacidades que permitan a individuos, instituciones y empresas comprometerse con la adopción de prácticas más saludables.

Interactive communication with the public: qualitative exploration of the use of social media by food and health organizations.

OBJECTIVE: To examine the use and impact of social media on 2-way communication between consumers and public organizations in the food safety and nutrition area. METHODS: In-depth qualitative study conducted between October, 2012 and January, 2013, using semi-structured interviews in the United Kingdom and Ireland. Sixteen professionals worked on the public interface within 5 national organizations with a role in communicating on food safety and nutrition issues in this thematic analysis. RESULTS: Five main themes were identified: gradual shift toward social media-based queries and complaints; challenges and limitations of social media to deal with queries and complaints; benefits of using social media in query and complaint services; content redesign driven by social media use; and using social media to learn more about consumers. CONCLUSION AND IMPLICATIONS: Social media penetrated and brought new opportunities to food organizations' interactions with the public. Given the increasing use of social media by the public, food organizations need to explore such new opportunities for communication and research.

A representação dos usuários nos Conselhos de Saúde: uma contribuição para o debate / The users' representation in the Health Councils: a contribution to the debate

Os Conselhos de Saúde, institucionalizados no início da década de 1990, foram concebidos como alternativas ao modelo tradicional de representação de interesses. Eles passaram a ter o poder legal de formular estratégias e controlar a execução da política de saúde nos níveis federal, estadual e municipal. Hoje em dia, todos os municípios e estados do Brasil têm um Conselho de Saúde, com representantes dos usuários, profissionais e gestores do Sistema Único de Saúde. Os usuários têm representação paritária em relação aos outros dois segmentos. O objetivo deste artigo é avaliar as motivações que os representantes dos usuários têm para participar dessa instância pública de representação de interesses. Metodologicamente, foram entrevistados doze Conselheiros representantes dos usuários no Rio de Janeiro, Porto Alegre e Recife. Os indícios encontrados nas palavras dos representantes dos usuários entrevistados indicaram a ratificação de práticas patrimonialistas. Este artigo se soma ao esforço analítico de alguns pesquisadores que, nos últimos anos, têm avaliado a experiência de organização e atuação dos Conselhos de Saúde, e inova ao avaliar o ponto de vista dos representantes dos usuários.

The Health Councils, institutionalized in the early 1990s, were designed as alternatives to the traditional model of lobbying. They have the legal power to formulate strategies and monitor implementation of health policy at the federal, state and municipal levels. Today, all municipalities and states in Brazil have a Health Council, with representatives of users, professionals and managers of the Unified Health System. Users have equal representation in the other two segments. This paper aims to assess the motivations that representatives of the users have to participate in this instance the public interest representation. Methodologically were interviewed 12 councilors, representatives of users in Rio de Janeiro, Porto Alegre and Recife. The evidence found in the words of the users' counselors surveyed indicated the ratification of patrimonial practices. This paper adds to the analytical efforts of some researchers in recent years have evaluated the experience of organization and actions of the Health Councils, and innovates to assess the views of users' counselors.

The role of patient advocacy organisations in neuromuscular disease R&D--The case of the Dutch neuromuscular disease association VSN.

This article investigates to what extent patient advocacy organisations play a role in influencing R&D and policymaking for rare neuromuscular diseases. The Dutch neuromuscular disease organisation VSN is studied in depth. A brief history of the VSN is sketched along with the international embedding of the organisation. Then, a more general perspective is provided on the reasons and extent of the involvement of patient organisations (and especially the VSN) in innovation processes. Lastly, internal mechanisms are presented that can best be applied by these organisations. The VSN adheres to a rare, long-term vision on drug innovation that requires long-term planning and policy and vision creation and steering the direction of science and technology. At the same time, other actors like scientific organisations and science policymakers and managers can benefit from these lessons to learn how to deal with patients and patient organisations in the future.

Trends in organised sport membership: impact on sustainability.

Sporting clubs play a key role in community-level physical activity. This study investigated participation trends in sport club membership. A survey of 50 State sports governing bodies in Victoria, Australia collected information on factors affecting membership trends. The records for four of these sports were analysed for the 6 years, 1998-2003. Three sports reported increases in total membership (average annual rates (AARs): 0.3, 1.9 and 12.4%), and one reported a decrease (AAR: -1.0%). There was a decrease in both the absolute number (AARs: -1.1%, -2.3%, and -3.5%) and the proportion (AARs: -0.5%, -0.7%, -1.7% and -2.3%) of adult members. The number of junior club members increased slightly over the 6-year period in two sports (AARs: 0.5% and 0.7%), increased substantially in one (AAR: 12.2%) and decreased in one (AAR: -6.7%). The number of members playing modified sports increased in two sports (AARs: 2.8% and 3.3%), increased substantially in one (AARs: 53.1%) and decreased in one (AAR: -16.3%). The introduction of modified sport for younger participants is relatively new, resulting in sports accessing a new market to maintain or increase their total membership. However, the influx of younger members was not matched by associated increases in adult members. This places increased pressure upon adult members to maintain the infrastructure to support younger members. The issues of decreased adult membership and increased junior membership need to be addressed in order to ensure that community sporting clubs can be sustained and fulfil their potential to act as a vehicle for public health initiatives.

Awareness, action, and collaboration: how the self-advocacy movement is empowering for persons with developmental disabilities.

In response to stigmatization and lack of opportunities in the United States, a self-advocacy movement by and for persons with developmental disabilities has grown. In parallel, in the empowerment literature in the social sciences, authors have sought to conceptualize the process of becoming empowered. There is little in the empowerment literature that fosters an understanding of the self-advocacy movement. In this paper, four relevant principles of empowerment (which concern gaining awareness of societal discrimination, individual rights, and personal strengths; taking action through participation in community organizations; and working collaboratively with supportive advisors) were considered. Through awareness, action, and collaborative support, self-advocates can transform themselves from marginalized targets of discrimination to respected citizens.

Constructive feedback in organizational team-building.

Ways constructive feedback can help an organization achieve and maintain a competitive advantage within and without the workplace is the topic of this chapter. An approach called 360 feedback is detailed, by which an employee is rated by workers at various levels in the organizational hierarchy instead of by a single supervisor.

A qualitative approach to assessing the effects of system change on consumers, families, and providers.

OBJECTIVE: In 1988 Vermont implemented a policy designed to reduce the state hospital census and expand community-based services. This qualitative study assessed perceptions of the policy's impact among mental health consumers, family members, and providers. METHODS: Eleven focus groups were convened, which included 94 participants from across the state. Separate groups were held for consumers, family members, and providers. Trained facilitators guided discussion of the policy's effect on quality of life, housing and vocational status, community integration, and social networks. Audiotapes of the discussion were transcribed, and content was analyzed. RESULTS: Several universal themes were noted. All participants reported that stigma was still a substantial barrier to integration and that community education to reduce stigma had not been effective. Tension between families and providers was a problem; family members felt that although providers depended on their supporting the consumer, they were not included in treatment planning. All participants noted that urban areas were better served by the policy's service packages. A lack of coordination of community services was reported to be a continuing problem across the state. In contrast to findings of previous studies, consumers in this study preferred not to live alone, which led to feelings of isolation. CONCLUSIONS: Service delivery in rural areas and system coordination throughout the state must be improved. Families' conflicting feelings of burden and isolation must be addressed. Further research should determine more clearly the range of housing preferences among consumers.

Empowerment and the psychiatric consumer/ex-patient movement in the United States: contradictions, crisis and change.

A political movement in the United States by consumers and ex-patients of psychiatry has challenged the assumptions and negative consequences of traditional mental health practice and its control by professionals. In recent years, the movement has succeeded in gaining support to produce alternative programs based on a philosophy of 'consumer empowerment' and run entirely by consumers and ex-patients. In this article, I present results from an ethnographic study of one such alternative and I attempt to explain the discrepancy between the center's philosophy of empowerment and its actual practices. Utilizing this data, the consumer literature, and interviews with consumer leaders nationwide, I explain this situation in terms of conceptual problems with the terms 'empowerment' and 'consumer empowerment', local structural conditions under which the center operated, and the larger situation of the psychiatric consumer/ex-patient movement in the United States today. The case study represents a crisis in the consumer movement today, in which rapid growth of alternatives has been accompanied by a social amnesia of the emancipatory vision that originally spawned the movement.

Consumer-centered social work practice: restoring client self-determination.

One of the highest traditional social work values is the maximization of client self-determination. In actual practice it is a difficult ethic to uphold, especially in this time of budget cuts and overwhelming caseloads. This article examines an orientation toward practice that places consumers at the center of decision making and control. The author examines current trends in the consumer movement, including advances among the aging, disabled, and mental health client populations. A comparison of medical-rehabilitation and independent living paradigms is presented to demonstrate fundamental philosophical differences. The author introduces suggestions to enhance participation by consumers for direct service workers, administrators and supervisors, and social work educators.

A consumer-operated case management project.

The idea that patients and former patients might themselves be involved in service delivery has become increasingly popular in recent years. Once viewed as an expression of patient protest without clinical merit, self-help services are now, at least in some places, accepted and endorsed by mental health planning authorities. This month's guest columnists describe the philosophical underpinnings of a state-funded consumer-operated case management program in Oregon and discuss both the hope and some of the potential difficulties that such an experimental effort may generate.