Putting Adolescents and Young Adults in a Room Together: Launching an Adolescent and Young Adult Oncology Council.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

Food Policy Council Self-Assessment Tool: Development, Testing, and Results.

A large number of food policy councils (FPCs) exist in the United States, Canada, and Tribal Nations (N = 278), yet there are no tools designed to measure their members' perceptions of organizational capacity, social capital, and council effectiveness. Without such tools, it is challenging to determine best practices for FPCs and to measure change within and across councils over time. This study describes the development, testing, and findings from the Food Policy Council Self-Assessment Tool (FPC-SAT). The assessment measures council practices and council members' perceptions of the following concepts: leadership, breadth of active membership, council climate, formality of council structure, knowledge sharing, relationships, member empowerment, community context, synergy, and impacts on the food system. All 278 FPCs listed on the Food Policy Network's Online Directory were recruited to complete the FPC-SAT. Internal reliability (Cronbach's α) and inter-rater reliability (AD, rWG(J), ICC [intraclass correlations][1], ICC[2]) were calculated, and exploratory and a confirmatory factor analyses were conducted. Responses from 354 FPC members from 94 councils were used to test the assessment. Cronbach's α ranged from 0.79 to 0.93 for the scales. FPC members reported the lowest mean scores on the breadth of active membership scale (2.49; standard deviation [SD], 0.62), indicating room for improvement, and highest on the leadership scale (3.45; SD, 0.45). The valid FPC-SAT can be used to identify FPC strengths and areas for improvement, measure differences across FPCs, and measure change in FPCs over time.

Civil society participation in the health system: the case of Brazil's Health Councils.

BACKGROUND: Brazil created Health Councils to bring together civil society groups, heath professionals, and government officials in the discussion of health policies and health system resource allocation. However, several studies have concluded that Health Councils are not very influential on healthcare policy. This study probes this issue further by providing a descriptive account of some of the challenges civil society face within Brazil's Health Councils. METHODS: Forty semi-structured interviews with Health Council Members at the municipal, state and national levels were conducted in June and July of 2013 and May of 2014. The geographical location of the interviewees covered all five regions of Brazil (North, Northeast, Midwest, Southeast, South) for a total of 5 different municipal Health Councils, 8 different state Health Councils, and the national Health Council in Brasilia. Interview data was analyzed using a thematic approach. RESULTS: Health Councils are limited by a lack of legal authority, which limits their ability to hold the government accountable for its health service performance, and thus hinders their ability to fulfill their mandate. Equally important, their membership guidelines create a limited level of inclusivity that seems to benefit only well-organized civil society groups. There is a reported lack of support and recognition from the relevant government that negatively affects the degree to which Health Council deliberations are implemented. Other deficiencies include an insufficient amount of resources for Health Council operations, and a lack of training for Health Council members. Lastly, strong individual interests among Health Council members tend to influence how members participate in Health Council discussions. CONCLUSIONS: Brazil's Health Councils fall short in providing an effective forum through which civil society can actively participate in health policy and resource allocation decision-making processes. Restrictive membership guidelines, a lack of autonomy from the government, vulnerability to government manipulation, a lack of support and recognition from the government and insufficient training and operational budgets have made Health Council largely a forum for consultation. Our conclusions highlight, that among other issues, Health Councils need to have the legal authority to act independently to promote government accountability, membership guidelines need to be revised in order include members of marginalized groups, and better training of civil society representatives is required to help them make more informed decisions.

Nuevas recomendaciones para el consejo anticonceptivo basadas en el estilo de vida. Resultados de un estudio Delphi / New lifestyle-based recommendations for contraceptive counseling. A Delphi study

Objetivo. Elaborar un listado de condiciones más allá de las condiciones médicas de la OMS que puedan ayudar en la toma de decisiones durante el proceso de asesoría anticonceptiva. Métodos. Estudio Delphi en el que 27 expertos contestaron a 24 preguntas planteadas por los coordinadores del estudio. Se requirió un nivel de consenso igual o superior al 50% del total de expertos consultados en cada una de las preguntas con respuesta de escala nominal formulada. Resultados. Tras el proceso Delphi se realizaron 20 recomendaciones sobre cuestiones relacionadas con el consejo anticonceptivo: condiciones médicas, época de la vida, estilo de vida, estado laboral, nivel académico, nivel económico, actividad sexual, métodos anticonceptivos y cumplimiento con el régimen anticonceptivo. Conclusiones. El consejo anticonceptivo debe de contemplar, además de las condiciones médicas, los aspectos relacionados con el estilo de vida de la mujer para mejorar la adherencia al método anticonceptivo más adecuado (AU)

Objective. To present a list of factors that go beyond the medical conditions established by the World Health Organization to assist decision-making during the process of contraceptive counseling. Methods. A Delphi study was carried out, in which 27 experts responded to 24 questions posed by the study coordinators. At least 50% agreement among the experts on a nominal scale was required in each of the questions. Results. After the Delphi process, 20 recommendations were made on issues related to contraceptive counseling: medical conditions, stage of life, lifestyle, employment status, educational level, economic status, sexual activity, contraceptive methods and contraceptive adherence. Conclusions. In addition to medical conditions, contraceptive counseling should include issues related to women's lifestyles in order to improve adherence to the most appropriate contraceptive method (AU)

[The limits of collective action in municipal health councils]. / Os limites da ação coletiva nos Conselhos Municipais de Saúde.

This article addresses the collective actions of participation in the municipal health councils. The underlying research sought to establish the performance of the councilors in the municipal health councils in the Metropolitan Region of Belém in the State of Pará. A survey of documents for the 2005-2010 period, structured interviews and observations with counselors in sessions of meetings of the boards of three counties were analyzed. An indicator of three levels of participation centered on the legal functions of the health councils and based on the theory of social groups as its analytical principle was constructed. The results indicate that the activities of the councils are marked by the co-option of councilors and the definition of deliberative agendas on the part of representatives of management, in which individual interests predominate over the collective interests of the councilors in the deliberations. The conclusion is that such behavior is contrary to the principles of the Unified Health System - SUS and weakens the social image of the councils, in addition to opening up a new analytical perspective.

Os limites da ação coletiva nos Conselhos Municipais de Saúde / The limits of collective action in municipal health councils

O artigo traz uma abordagem sobre as ações coletivas de participação nos conselhos municipais de saúde. A pesquisa que o fundamenta teve como objetivo verificar a atuação dos conselheiros nos conselhos municipais de saúde da Região Metropolitana de Belém (PA). Foi utilizado levantamento documental (período 2005 a 2010), entrevistas estruturadas com conselheiros e observações em sessões de reuniões dos conselhos de três municípios. Foi construído um indicador de três níveis de participação com base nas funções legais dos conselhos de saúde, tendo como fundamento analítico a teoria dos grupos sociais. Os resultados indicam que as ações dos conselhos são marcadas por cooptação de conselheiros, definição de agendas deliberativas por parte de representantes da gestão, predominando os interesses individuais dos conselheiros sobre os interesses coletivos nas deliberações. Concluiu que tais comportamentos contrariam os princípios do Sistema Único de Saúde - SUS e fragiliza a imagem social dos conselhos, além de abrir uma nova perspectiva de análise.

This article addresses the collective actions of participation in the municipal health councils. The underlying research sought to establish the performance of the councilors in the municipal health councils in the Metropolitan Region of Belém in the State of Pará. A survey of documents for the 2005-2010 period, structured interviews and observations with counselors in sessions of meetings of the boards of three counties were analyzed. An indicator of three levels of participation centered on the legal functions of the health councils and based on the theory of social groups as its analytical principle was constructed. The results indicate that the activities of the councils are marked by the co-option of councilors and the definition of deliberative agendas on the part of representatives of management, in which individual interests predominate over the collective interests of the councilors in the deliberations. The conclusion is that such behavior is contrary to the principles of the Unified Health System - SUS and weakens the social image of the councils, in addition to opening up a new analytical perspective.

Bogus neurosurgeon beats system hands down.

The Health Professions Council of South Africa (HPCSA)'s top management has ordered a probe of all foreign-qualified specialist registrations going back at least a decade, and instituted a 'double verification' mechanism for all future such applications following a dramatic system failure.

Modifying the Medical Research Council grading system through Rasch analyses.

The Medical Research Council grading system has served through decades for the evaluation of muscle strength and has been recognized as a cardinal feature of daily neurological, rehabilitation and general medicine examination of patients, despite being respectfully criticized due to the unequal width of its response options. No study has systematically examined, through modern psychometric approach, whether physicians are able to properly use the Medical Research Council grades. The objectives of this study were: (i) to investigate physicians' ability to discriminate among the Medical Research Council categories in patients with different neuromuscular disorders and with various degrees of weakness through thresholds examination using Rasch analysis as a modern psychometric method; (ii) to examine possible factors influencing physicians' ability to apply the Medical Research Council categories through differential item function analyses; and (iii) to examine whether the widely used Medical Research Council 12 muscles sum score in patients with Guillain-Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy would meet Rasch model's expectations. A total of 1065 patients were included from nine cohorts with the following diseases: Guillain-Barré syndrome (n = 480); myotonic dystrophy type-1 (n = 169); chronic inflammatory demyelinating polyradiculoneuropathy (n = 139); limb-girdle muscular dystrophy (n = 105); multifocal motor neuropathy (n = 102); Pompe's disease (n = 62) and monoclonal gammopathy of undetermined related polyneuropathy (n = 8). Medical Research Council data of 72 muscles were collected. Rasch analyses were performed on Medical Research Council data for each cohort separately and after pooling data at the muscle level to increase category frequencies, and on the Medical Research Council sum score in patients with Guillain-Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy. Disordered thresholds were demonstrated in 74-79% of the muscles examined, indicating physicians' inability to discriminate between most Medical Research Council categories. Factors such as physicians' experience or illness type did not influence these findings. Thresholds were restored after rescoring the Medical Research Council grades from six to four options (0, paralysis; 1, severe weakness; 2, slight weakness; 3, normal strength). The Medical Research Council sum score acceptably fulfilled Rasch model expectations after rescoring the response options and creating subsets to resolve local dependency and item bias on diagnosis. In conclusion, a modified, Rasch-built four response category Medical Research Council grading system is proposed, resolving clinicians' inability to differentiate among its original response categories and improving clinical applicability. A modified Medical Research Council sum score at the interval level is presented and is recommended for future studies in Guillain-Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy.

[The role of management councils of public policies: a debate on practices in the Municipal Councils of Chapecó, Santa Catarina State]. / O papel dos conselhos gestores de políticas públicas: um debate a partir das práticas em Conselhos Municipais de Chapecó (SC).

In this work we analyze the effectiveness of social control from a study of attributions of Municipal Councils of: social assistance, children and teenagers' rights, health and, education in Chapecó city. The data was collected by the reading of official documents, application of questionnaires, systematic observation and a meeting in which the focus group technique was used. Five categories of action were found: to deliberate, to supervise, to regulate, to give assistance, to communicate, and other less frequents actions. The analysis of information revels an overcharge of attributions of bureaucracy, restricting the political debate on the role of councilors. Besides this, we question the legitimacy of the conferred attributions, considering the objective conditions of its participation: the volunteer character, non-remunerated; the restrict time of the meetings the lack of qualified and self-made physical and operational structure, and others. The Management Councils are the spaces of citizenship practice, what requires a bigger actuation in creation and strength of dialogue processes with different social actors, establishing a connection in the partner net in favor of dealing with social problems of the city and the construction of favorable conditions for life.

O papel dos conselhos gestores de políticas públicas: um debate a partir das práticas em Conselhos Municipais de Chapecó (SC) / The role of management councils of public polices: a debate on practices in the Municipal Councils of Chapecó, Santa Catarina State

Neste trabalho, analisamos a efetividade do controle social a partir do estudo sobre atribuições dos Conselhos Municipais da Assistência Social, dos Direitos da Criança e do Adolescente, da Educação e da Saúde no município de Chapecó (SC). Os dados foram coletados através da leitura de documentos oficiais, aplicação de formulários, observação sistemática e de um encontro utilizando a técnica do grupo focal. Foram identificadas cinco categorias de ação: deliberar, fiscalizar, normatizar, prestar assessoria, comunicar, além de outras ações menos frequentes. A análise das informações revela sobrecarga de atribuições burocráticas, restringindo o debate político inerente ao papel dos conselheiros. Além disso, questionamos a legitimidade de suas atribuições, considerando as condições objetivas de sua participação: o caráter voluntário, não profissional, não remunerado; o tempo restrito dos encontros; a falta de estrutura física e operacional qualificada e autônoma, entre outras. Os conselhos gestores são espaços de exercício de cidadania, o que requer maior atuação na criação e no fortalecimento de canais e processos de diálogo com diferentes atores sociais, constituindo elos na rede de parcerias em prol do enfrentamento dos problemas sociais da cidade e da construção de condições favoráveis à vida.

In this work we analyze the effectiveness of social control from a study of attributions of Municipal Councils of: social assistance, children and teenagers' rights, health and, education in Chapecó city. The data was collected by the reading of official documents, application of questionnaires, systematic observation and a meeting in which the focus group technique was used. Five categories of action were found: to deliberate, to supervise, to regulate, to give assistance, to communicate, and other less frequents actions. The analysis of information revels an overcharge of attributions of bureaucracy, restricting the political debate on the role of councilors. Besides this, we question the legitimacy of the conferred attributions, considering the objective conditions of its participation: the volunteer character, non-remunerated; the restrict time of the meetings the lack of qualified and self-made physical and operational structure, and others. The Management Councils are the spaces of citizenship practice, what requires a bigger actuation in creation and strength of dialogue processes with different social actors, establishing a connection in the partner net in favor of dealing with social problems of the city and the construction of favorable conditions for life.

Who gets born? How did New Zealand's Bioethics Council arrive at its recommendations?

The Bioethics Council's Report Who Gets Born? elicited considerable public comment with its recommendation regarding the use of preimplantation genetic diagnosis (PGD) for sex selection for social reasons. The Report was based on a process of deliberative consultation, in which determined efforts had been expended to obtain the views of ordinary New Zealanders. Consequently, the manner in which the recommendations, including this particular one on sex selective PGD, were informed by the consultation is of considerable interest. We argue that the Council is unclear about the role that the views of the public should play in its activities. It appears to place great emphasis on involving the public in formulating policy conclusions through deliberative consultation, but some of its recommendations suggest that the views of the public have only been allowed to play a limited role in its reasoning. Unfortunately, the Council's report does not provide sufficient detail of the reasoning underlying these recommendations. We argue that the Council should have adopted a more transparent style of reporting, thereby enabling the public to understand both the scope of their influence on the Council and the reasoning behind the recommendations. This would have allowed the report to be more constructively critiqued, and the controversy attendant on the release of the report to be minimised.

The RSPH Health Promotion and Community Well-Being Organization and Partnership Awards.

The Royal Society for Public Health (RSPH) has launched the Health Promotion and Community Well-Being Organization and Partnership Awards, in collaboration with the Faculty of Public Health, the UK Public Health Register and the Institute of Health Promotion and Education. The Awards demonstrate the new Society's mission of "vision, voice and practice", and will raise the profile of health promotion in the UK and recognize good practice through public and professional acknowledgement. They are linked to a wider programme of advocacy and workforce development led by the RSPH through the Shaping the Future collaboration (see http://www.specialisedhealthpromotion.org.uk). The Awards have a powerful pedigree in the "settings" approach of the World Health Organization, and focus on the strong processes that organizations and partnerships need to develop and implement strategies. The Awards have been developed in partnership with four initial applicants from primary care trusts, and one partnership applicant spanning a primary care trust, local authority and Council for Voluntary Services. Assessment of applications is through peer review and a panel challenge. Examples of evidence from the five initial applicants, and how they relate to the criteria for the Awards, are showcased in this article. They are: Sefton's Health-Promoting Settings Network; the North East Essex Youth Health Trainers scheme; Health Equity Audits in Rotherham; public engagement in North Lancashire; and Health at Work in Plymouth.