Mandatory fortification with folic acid for the prevention of neural tube defects: a case study of Australia and New Zealand.

PURPOSE: To present a case study of the considerations of mandatory fortification with folic acid in Australia and New Zealand. METHODS: Review of published reports and consumer advocacy views. RESULTS: Australia and New Zealand jointly approved mandatory fortification of flour with folic acid to prevent neural tube defects in 2007. Fortification was fully implemented in Australia in 2009 and has resulted in reduction in NTD. At the last minute, industry lobbying led to the New Zealand government not proceeding with fortification. With continued consumer advocacy, mounting scientific evidence, and a change of government, approval was given in 2021 for mandatory fortification of flour with folic acid. CONCLUSION: In large part as a response to consumer pressure, New Zealand has now joined with Australia (and around 70 other countries) in fortifying flour with folic acid for the prevention of NTD.

Code poverty: An adaptation of the social-ecological model to inform a more strategic direction toward nursing advocacy.

The purpose of this discussion paper is to explore how nurses can be strategically poised to advocate for needed policy change in support of greater income equality and other social determinants of health. We adapted Bronfenbrenner's social-ecological model to highlight how four broad pervasive subsystems shape the opportunities that nurses have to engage in advocacy at the policy level. These subsystems include organizations (the microsystem), professional bodies (the mesosystem), public policies (the exosystem), and societal values (the macrosystem). On the basis of this adapted model, we recommend changes among modifiable elements of the microsystem and mesosystem that can help position nurses (ecologically and collectively) to advocate for public policy change and use examples from a Canadian context to illustrate these points. We believe that the ideas arising from this model can be widely used where policy action on the social determinants of health is needed to inform, guide, and frame change efforts and advocacy work.

ALGORITHMS, ADDICTION, AND ADOLESCENT MENTAL HEALTH: An Interdisciplinary Study to Inform State-level Policy Action to Protect Youth from the Dangers of Social Media.

A recent Wall Street Journal investigation revealed that TikTok floods child and adolescent users with videos of rapid weight loss methods, including tips on how to consume less than 300 calories a day and promoting a "corpse bride diet," showing emaciated girls with protruding bones. The investigation involved the creation of a dozen automated accounts registered as 13-year-olds and revealed that TikTok algorithms fed adolescents tens of thousands of weight-loss videos within just a few weeks of joining the platform. Emerging research indicates that these practices extend well beyond TikTok to other social media platforms that engage millions of U.S. youth on a daily basis.Social media algorithms that push extreme content to vulnerable youth are linked to an increase in mental health problems for adolescents, including poor body image, eating disorders, and suicidality. Policy measures must be taken to curb this harmful practice. The Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED), a research program based at the Harvard T.H. Chan School of Public Health and Boston Children's Hospital, has assembled a diverse team of scholars, including experts in public health, neuroscience, health economics, and law with specialization in First Amendment law, to study the harmful effects of social media algorithms, identify the economic incentives that drive social media companies to use them, and develop strategies that can be pursued to regulate social media platforms' use of algorithms. For our study, we have examined a critical mass of public health and neuroscience research demonstrating mental health harms to youth. We have conducted a groundbreaking economic study showing nearly $11 billion in advertising revenue is generated annually by social media platforms through advertisements targeted at users 0 to 17 years old, thus incentivizing platforms to continue their harmful practices. We have also examined legal strategies to address the regulation of social media platforms by conducting reviews of federal and state legal precedent and consulting with stakeholders in business regulation, technology, and federal and state government.While nationally the issue is being scrutinized by Congress and the Federal Trade Commission, quicker and more effective legal strategies that would survive constitutional scrutiny may be implemented by states, such as the Age Appropriate Design Code Act recently adopted in California, which sets standards that online services likely to be accessed by children must follow. Another avenue for regulation may be through states mandating that social media platforms submit to algorithm risk audits conducted by independent third parties and publicly disclose the results. Furthermore, Section 230 of the federal Communications Decency Act, which has long shielded social media platforms from liability for wrongful acts, may be circumvented if it is proven that social media companies share advertising revenues with content providers posting illegal or harmful content.Our research team's public health and economic findings combined with our legal analysis and resulting recommendations, provide innovative and viable policy actions that state lawmakers and attorneys general can take to protect youth from the harms of dangerous social media algorithms.

Advocacy for health equity: a synthesis review.

UNLABELLED: POLICY POINTS: Many barriers hamper advocacy for health equity, including the contemporary economic zeitgeist, the biomedical health perspective, and difficulties cooperating across policy sectors on the issue. Effective advocacy should include persistent efforts to raise awareness and understanding of the social determinants of health. Education on the social determinants as part of medical training should be encouraged, including professional training within disadvantaged communities. Advocacy organizations have a central role in advocating for health equity given the challenges bridging the worlds of civil society, research, and policy. CONTEXT: Health inequalities are systematic differences in health among social groups that are caused by unequal exposure to-and distributions of-the social determinants of health (SDH). They are persistent between and within countries despite action to reduce them. Advocacy is a means of promoting policies that improve health equity, but the literature on how to do so effectively is dispersed. The aim of this review is to synthesize the evidence in the academic and gray literature and to provide a body of knowledge for advocates to draw on to inform their efforts. METHODS: This article is a systematic review of the academic literature and a fixed-length systematic search of the gray literature. After applying our inclusion criteria, we analyzed our findings according to our predefined dimensions of advocacy for health equity. Last, we synthesized our findings and made a critical appraisal of the literature. FINDINGS: The policy world is complex, and scientific evidence is unlikely to be conclusive in making decisions. Timely qualitative, interdisciplinary, and mixed-methods research may be valuable in advocacy efforts. The potential impact of evidence can be increased by "packaging" it as part of knowledge transfer and translation. Increased contact between researchers and policymakers could improve the uptake of research in policy processes. Researchers can play a role in advocacy efforts, although health professionals and disadvantaged people, who have direct contact with or experience of hardship, can be particularly persuasive in advocacy efforts. Different types of advocacy messages can accompany evidence, but messages should be tailored to advocacy target. Several barriers hamper advocacy efforts. The most frequently cited in the academic literature are the current political and economic zeitgeist and related public opinion, which tend to blame disadvantaged people for their ill health, even though biomedical approaches to health and political short-termism also act as barriers. These barriers could be tackled through long-term actions to raise public awareness and understanding of the SDH and through training of health professionals in advocacy. Advocates need to take advantage of "windows of opportunity," which open and close quickly, and demonstrate expertise and credibility. CONCLUSIONS: This article brings together for the first time evidence from the academic and the gray literature and provides a building block for efforts to advocate for health equity. Evidence regarding many of the dimensions is scant, and additional research is merited, particularly concerning the applicability of findings outside the English-speaking world. Advocacy organizations have a central role in advocating for health equity, given the challenges bridging the worlds of civil society, research, and policy.

A randomized practical behavioural trial of curriculum-based advocacy training for individuals with traumatic brain injury and their families.

PRIMARY OBJECTIVE: To test whether a curriculum-based advocacy training programme improves advocacy behaviour when compared to a matched group engaged in self-directed advocacy activities. RESEARCH DESIGN: Community-based randomized practical behavioural trial. METHODS AND PROCEDURES: Adults with moderate-severe TBI 1 or more years post-injury and their family members were recruited in Minnesota (4 years), Iowa and Wisconsin (each 3 years) and randomized into a curriculum-based or self-directed advocacy training group. Both groups met on the same day, at separate locations in the same city, once per month for 4 consecutive months. MAIN OUTCOMES AND RESULTS: Pre-post written and video testimony were rated using the Advocacy Behaviour Rating Scale (ABRS). Mean ABRS scores increased after intervention in both groups (curriculum n = 129, self-directed n = 128), but there was no significant difference in this increase between groups. When groups were combined, a significant pre-post improvement in mean ABRS scores was observed. CONCLUSIONS: Curriculum-based advocacy training was not superior to a self-directed approach in improving ABRS scores. A significant improvement in expression of an advocacy message was observed when intervention groups were combined. These findings suggest that bringing together like-minded motivated individuals is more important than programme structure or content in changing advocacy behaviour.

The experience of psychosis and recovery from consumers' perspectives: An integrative literature review.

WHAT IS KNOWN ON THE SUBJECT?: Since the first decade of this century, few qualitative studies and literature reviews have reported consumers' experiences of psychosis and recovery. The findings from these studies need further exploration. WHAT DOES THE PAPER ADD TO EXISTING KNOWLEDGE?: New insights into consumers' experiences of psychosis were generated. Additionally, understanding of consumers' conceptions and experiences of recovery were reported. Consumers' insights into the enablers and barriers to recovery that they encountered were also identified. Gaps in the literature remain, particularly those related to the effects of gender and culture on consumers' experiences of and recovery from psychosis. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Nurses' understanding of consumers' perspectives and experiences of psychosis is vital to enhancing the quality of mental health nursing when caring for people living with psychosis. To support user-based recovery, mental health nurses need to incorporate person-centred approaches and reduce their preferencing of medical understandings of recovery. ABSTRACT: INTRODUCTION: Psychosis is a distressing disorder. Consumers' perspectives about their experiences of psychosis and recovery are essential aspects of mental health nursing. AIMS: To review contemporary evidence related to consumers' experiences of and recovery from psychosis. METHOD: An integrative review was the method used; six databases were systematically searched. Of the 157 articles screened, 14 met the inclusion criteria and were assessed for quality using Joanna Briggs Institute Appraisal tools. Data were compared, classified and integrated. RESULTS: Findings revealed that consumers' experiences of psychosis included issues with self-expression and language, psychosocial problems and stigma. Also, consumers' experiences associated with their recovery were reported, and this included their perspectives on the enablers and barriers that they encountered. DISCUSSION: Consumer's experiences of and recovery from psychosis provide an essential basis for managing and working with people experiencing psychosis. Further research identifying the potential effects of gender and culture into consumers' lived experiences is required. IMPLICATIONS FOR PRACTICE: Exploring the experience of someone with psychosis will help nurses to understand the impacts of this condition. This understanding can guide nurses to apply recovery-oriented practices. Specific aspects of psychosis experience, including gender and culture, should inform nurses' practices towards recovery.

System-level barriers to personal recovery in mental health: qualitative analysis of co-productive narrative dialogues between users and professionals.

BACKGROUND: No co-productive narrative synthesis of system-level facilitators and barriers to personal recovery in mental illness has been undertaken. AIMS: To clarify system-level facilitators and barriers to personal recovery of people with mental illness. METHOD: Qualitative study guided by thematic analysis. Data were collected through one focus group, which involved seven service users and three professionals. This group had 11 meetings, each lasting 2 h at a local research institute, between July 2016 to January 2018. RESULTS: The analysis yielded three themes: barriers inhibiting positive interaction within personal relationship networks, roots of barriers from mental health systems and the social cultural context, and possible solutions to address the roots. Barriers were acknowledged as those related to sense of safety, locus of control within oneself and reunion with self. The roots of barriers were recognised within mental health services, including system without trauma sensitivity, lack of advocacy support and limited access to psychosocial approaches. Roots from social cultural context were also found. There were no narratives relating to facilitators. A possible solution was to address the roots from systems. Social cultural change was called for that makes personalised goals most valued, with an inclusive design that overcomes stigma, to achieve an open and accepting community. CONCLUSIONS: The analysis yielded system-level barriers specific to each recovery process. Roots of barriers that need transformation to facilitate personal recovery were identified within mental health services. Social interventions should be further explored to translate the suggested social cultural changes into action.

Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice.

As involvement of consumers/survivors in planning, delivery, and evaluation of services has increased, expectations of authentic and effective engagement, versus tokenism, have also risen. Different factors contribute to, or detract from, authentic engagement. Writing from mental health consumer/survivor and nursing positioning, respectively, we aim to redress the common problem of including only a narrow range of views and voices. This paper introduces a conceptual model that supports leaders in research, clinical, service, and policy roles to understand the necessity of engaging with a broader spectrum of consumer/survivor views and voices. The model draws on published consumer/survivor materials, making explicit diverse experiences of treatment and care and identifying the subsequent rich consumer/survivor advocacy agendas. We propose that strong co-production is made possible by recognizing and welcoming consumer/survivor activist, facilitator, transformer, and humanizer contributions. The conceptual model forms the basis for a proposed qualitative validation project.

Stakeholder views about a novel consumer health resource for knee osteoarthritis.

Objective: This study aimed to explore consumers', clinicians', and arthritis advocates' perceptions of a novel osteoarthritis (OA) information booklet that challenged existing beliefs, integrated a biopsychosocial perspective, and incorporated consumer voice and experience. Design: A mixed-methods study was conducted using an evaluation survey completed after first reading the booklet and subsequent focus groups with Thematic Analysis. Focus groups were conducted with consumers (people with OA; four groups; n = 19), general practitioners (two groups; n = 11), primary healthcare nurses (two groups; n = 14) and arthritis advocates (two groups; n = 12). Results: Quantitative data identified positive initial impressions of the booklet. Four key themes emerged from the focus groups related to: i) an informative and empowering booklet; ii) the need to be clear about the booklet's purpose and audience; iii) discordance between clinician, advocate, and consumer perspectives; and iv) information and advice conflicting with prior beliefs or experience. Conclusion: A novel information booklet was well received by consumers, clinicians, and arthritis advocates. New information resources can be improved in partnership with consumers and key stakeholders. Co-design with consumers needs to be carefully considered during resource development as consumer views often contrasted with professionals' perceptions of consumer needs. Successful implementation of updated OA information will require a multi-faceted approach that also targets clinicians' knowledge and beliefs.

Application of Community-Engaged Research to Inform the Development and Implementation of a Peer-Delivered Mobile Health Intervention for Adults With Serious Mental Illness.

BACKGROUND: Involving certified peer specialists in all phases of intervention development and research is a high priority to advance peer-delivered services. Certified peer specialists are individuals with a lived experience of a mental illness, and they are trained and accredited to provide Medicaid reimbursable mental health services. Community-engaged research can facilitate the development and implementation of peer-delivered interventions; however, little is known about the processes. We present our application of community-engaged research to inform the development and implementation of a peer-delivered mobile health (mHealth) intervention for adults with serious mental illness. OBJECTIVE: The aim of this study was to present a framework that can be used as a guide for researchers and certified peer specialists to develop and implement peer-delivered mHealth interventions in community settings. METHODS: Informed by principles of community-engaged research, we developed the Academic Researchers-Certified Peer Specialists mHealth Research Continuum. Principles of community-engaged research included in the Continuum include the following: (1) develop a clear understanding of the purpose, goal, and population involved in community change; (2) become knowledgeable about all aspects of the community; (3) interact and establish relationships with the community; (4) encourage community self-determination; (5) partner with the community; (6) respect community diversity and culture; (7) activate community assets and develop capacity; (8) maintain flexibility; and (9) commit to long-term collaboration. RESULTS: Overall, 4 certified peer specialists participated in all phases of intervention development and research. Individuals who participated in the Academic Researchers-Certified Peer Specialists' mHealth Research Continuum collaborated on 5 studies advancing peers' roles in services delivery using mHealth and secured grant funding from a foundation to sustain their study. The Academic Researchers-Certified Peer Specialists' mHealth Research Continuum has created a rare environment of inclusion by combining scientific expertise and certified peer specialists' expertise to achieve a shared vision. CONCLUSIONS: This study delineates a process by which academic researchers and certified peer specialists participated in community-engaged research to develop and implement peer-delivered mHealth interventions in community settings.

The mental health users' movement in Argentina from the perspective of Latin American Collective Health.

The mental health users' movement is a worldwide phenomenon that seeks to resist disempowerment and marginalisation of people living with mental illness. The Latin American Collective Health movement sees the mental health users' movement as an opportunity for power redistribution and for autonomous participation. The present paper aims to analyze the users' movement in Argentina from a Collective Health perspective, by tracing the history of users' movement in the Country. A heterogeneous research team used a qualitative approach to study mental health users' associations in Argentina. The local impact of the Convention on the Rights of Persons with Disabilities and the regulations of Argentina's National Mental Health Law are taken as fundamental milestones. A strong tradition of social activism in Argentina ensured that the mental health care reforms included users' involvement. However, the resulting growth of users' associations after 2006, mainly to promote their participation through institutional channels, has not been followed by a more radical power distribution. Associations dedicated to the self-advocacy include a combination of actors with different motives. Despite the need for users to form alliances with other actors to gain ground, professional power struggles and the historical disempowerment of 'patients' stand as obstacles for users' autonomous participation.

Home Parenteral Nutrition Reimbursement and American Society for Parenteral and Enteral Nutrition Public Policy Efforts.

Home parenteral nutrition (HPN) has been considered a lifesaving intervention since the late 1960s for patients with gastrointestinal (GI) failure and other conditions that affect the GI tract who are well enough to be at home. Payment for this therapy under federal programs requires significant documentation and complex processes to qualify. Medicare parenteral nutrition policy, qualification processes and challenges, and advocacy supported by the American Society for Parenteral and Enteral Nutrition are reviewed with the goal of increasing clinician awareness of the complexity surrounding Medicare HPN reimbursement.

Strategies to promote public engagement around deprescribing.

Many seniors remain unaware that certain medications may be harmful, despite high rates of polypharmacy and inappropriate medication use among community-dwelling older adults. Patient education is an effective method for reducing the use of inappropriate medications. Increasing public awareness and engagement is essential for promoting shared decision-making to deprescribe. The Canadian Deprescribing Network was created to address the lack of a systematic pan-Canadian initiative to implement deprescribing among older Canadians. The Canadian Deprescribing Network deliberately included patient advocates in its organization from the outset, in order to ensure a key strategic focus on public awareness and education. In this paper, we present the processes and activities rolled out by the Canadian Deprescribing Network as a blueprint model for engaging the public on deprescribing. Embedded within the structure of the network, the subcommittee on public awareness and engagement implements an action plan that includes needs assessments, population surveys, focus groups, deprescribing fairs, national stakeholders' meetings, public lectures and monthly exchanges with community champions and seniors' organizations. Educational materials and online media have been developed based on the answers to the questions: what information do seniors need about deprescribing? who should this information be delivered to? who needs to deliver the message? and how should seniors be engaged in deprescribing? In conjunction with seniors' organizations, members of the Network have iteratively refined key deprescribing messages, disseminated information about deprescribing, engaged the press and created a grass roots-driven public awareness and education campaign across Canada. Over 3000 seniors and seniors' organizations are involved, with over 25,000 educational tools being distributed across the country.

Development of guidelines for giving community presentations about eating disorders: a Delphi study.

BACKGROUND: Concerns exist around how to talk about eating disorders (EDs) due to evidence that suggests discussing ED symptoms and behaviours may cause or worsen symptoms in vulnerable people. Using expert consensus, we developed a set of guidelines for giving safe community presentations about EDs. METHODS: Participants with professional ED expertise, and people with lived experience of an ED, were recruited for a Delphi study. N = 26 panel members rated 367 statements for both a) inclusion in guidelines, and b) their potential to be helpful (increase knowledge, reduce stigma) or harmful (increase stigma, cause/worsen ED symptoms). After each round of the study, statements were classified as endorsed, re-rate, or not endorsed. RESULTS: 208 statements were endorsed by the panel over three rounds. 13 statements were strongly endorsed in the first round, with both people with lived experience and professionals agreeing it is important for presentations to include information on etiology of EDs and to promote help-seeking. Several statements had a high level of disagreement between those with lived experience and professionals, including the idea that presentations should suggest dieting is likely to result in weight gain. DISCUSSION: The experts were able to develop consensus on a wide range of issues. Panel members, particularly people with lived experience, were sensitive to aspects of presentations that may be harmful to an audience. The guidelines fill an important gap in the literature and provide guidance to those educating the public about EDs; they should, however, be further evaluated to test their efficacy.

Reclamações fundamentadas de âmbito odontológico no PROCON do estado da Paraíba / Grounded dental complaints in PROCON of the state of Paraíba

Introdução: A relação entre pacientes e profissionais, vista como contratação de prestação serviços, em conjunto com o advento do Código de Defesa do Consumidor, traz como consequência o maior conhecimento sobre direitos por parte dos consumidores, os quais passaram, com mais frequência, a reclamar e a buscar ressarcimentos pelos possíveis danos causados. Objetivo: Analisar as reclamações fundamentadas de âmbito odontológico obtidas do PROCON da Paraíba. Material e Métodos: Estudo observacional documental, com universo composto de todos os processos de reclamações fundamentadas oriundos dos relatórios disponibilizados, através do Sistema Nacional de Informações de Defesa do Consumidor, pelo PROCON da Paraíba, sendo a amostra representada pelas reclamações de âmbito odontológico entre 2015 e 2021, as quais foram analisadas de forma descritiva. Resultados: Foram registradas 13.893 reclamações fundamentadas, sendo 66 de âmbito odontológico (0,47%); o ano com maior percentual encontrado foi o de 2020 (0,73%); das reclamações de âmbito odontológico, houve maior frequência de casos relacionados aos planos odontológicos (66,66%), seguidos das clínicas ou consultórios odontológicos (31,81%), restando apenas uma reclamação registrada na categoria cirurgiões-dentistas (1,51%); os principais motivos relatados foram problemas com o Serviço de Atendimento ao Consumidor (SAC), cobrança indevida ou não autorizada e publicidade enganosa; e houve predominância de atendimentos às reivindicações. Conclusão: Não houve constância de crescimento das reclamações de âmbito odontológico obtidas do PROCON/PB entre os anos de 2015 a 2021, os planos odontológicos constituíram seu maior alvo, tendo como principal motivo a reclamação contra o SAC

Introduction: The relationship between patients and professionals, seen as contracting services, together with the advent of the Consumer Protection Code, brings as a consequence greater knowledge about rights on the part of consumers, who have more often claim and seek compensation for possible damages caused. Objective: To analyze substantiated dental complaints obtained from PROCON in Paraíba. Material and Methods: Observational documentary study, with a universe composed of all substantiated complaints processes arising from the reports made available, through the National Consumer Protection Information System, by PROCON of Paraíba, with the sample represented by dental complaints between 2015 and 2021, which were analyzed in a descriptive way. Results: 13,893 substantiated complaints were registered, of which 66 were related to dentistry (0.47%); the year with the highest percentage found was 2020 (0.73%); of dental complaints, there was a higher frequency of cases related to dental plans (66.66%), followed by dental clinics or offices (31.81%), leaving only one complaint registered in the dental surgeons category (1.51% ); the main reasons reported were problems with the Customer Service (SAC), improper or unauthorized billing and misleading advertising; and there was a predominance of requests for assistance. Conclusion: There was no constant growth in dental complaints obtained from PROCON/PB between the years 2015 to 2021, dental plans were its biggest target, with the main reason being the complaint against the SAC

Challenges to generating evidence-informed policy and the role of systematic reviews and (perceived) conflicts of interest.

BACKGROUND: Multiple efforts to generate evidence-informed policy have attempted to teach policymakers how to understand and apply scientific research findings in their decision-making. These efforts have had limited success, because policymakers generally do not understand scientific methods. OBJECTIVE: We piloted efforts to teach policy intermediaries - specifically consumer advocacy groups - how to understand and apply health research, anticipating that they might offer such evidence to policymakers in more accessible forms. DESIGN: Four workshops focusing on research design and methods were conducted with consumer advocacy groups in 2010. We coded and analyzed participant responses regarding their confidence in interpreting research findings and assessments of research credibility, and the extent to which their knowledge about research findings changed after completing the workshops. RESULTS: Our findings suggest that although participants expressed strong interest in understanding scientific research, their ability to develop confidence about scientific research methods was limited. However, like policymakers, consumer advocacy group members intuited that financial conflicts of interest could compromise scientific findings, although they initially underestimated their effects on research results. After training, consumer advocates also saw the value of using systematic reviews rather than individual studies. DISCUSSION AND CONCLUSIONS: Our findings suggest that although advocates may not feel confident in their understanding of scientific research, they found it easier to understand the value of systematic reviews and the risks of conflicts of interest than other statistical concepts and terminology. Focusing on making these types of information available may offer a useful way for policymakers and consumer advocates to interpret the validity of policy-relevant scientific research.

Expert and Advocacy Group Consensus Findings on the Horizon of Public Health Genetic Testing.

DESCRIPTION: Among the two leading causes of death in the United States, each responsible for one in every four deaths, heart disease costs Americans $300 billion, while cancer costs Americans $216 billion per year. They also rank among the top three causes of death in Europe and Asia. In 2012 the University of Michigan Center for Public Health and Community Genomics and Genetic Alliance, with the support of the Centers for Disease Control and Prevention Office of Public Health Genomics, hosted a conference in Atlanta, Georgia to consider related action strategies based on public health genomics. The aim of the conference was consensus building on recommendations to implement genetic screening for three major heritable contributors to these mortality and cost figures: hereditary breast and ovarian cancer (HBOC), familial hypercholesterolemia (FH), and Lynch syndrome (LS). Genetic applications for these three conditions are labeled with a "Tier 1" designation by the U.S. Centers for Disease Control and Prevention because they have been fully validated and clinical practice guidelines based on systematic review support them. METHODOLOGY: The conference followed a deliberative sequence starting with nationally recognized clinical and public health presenters for each condition, followed by a Patient and Community Perspectives Panel, working group sessions for each of the conditions, and a final plenary session. The 74 conference participants represented disease research and advocacy, public health, medicine and nursing, genetics, governmental health agencies, and industry. Participants drew on a public health framework interconnecting policy, clinical intervention, surveillance, and educational functions for their deliberations. RESULTS: Participants emphasized the importance of collaboration between clinical, public health, and advocacy groups in implementing Tier 1 genetic screening. Advocacy groups could help with individual and institutional buy-in of Tier 1 programs. Groups differed on funding strategies, with alternative options such as large-scale federal funding and smaller scale, incremental funding solutions proposed. Piggybacking on existing federal breast and colorectal cancer control programs was suggested. Public health departments need to assess what information is now being collected by their state cancer registries. The groups advised that information on cascade screening of relatives be included in toolkits for use by states. Participants stressed incorporation of family history into health department breast cancer screening programs, and clinical HBOC data into state surveillance systems. The carrying out of universal LS screening of tumors in those with colorectal cancer was reviewed. Expansion of universal screening to include endometrial tumors was discussed, as was the application of guidelines recommending cholesterol screening of children 9-11 years old. States more advanced in terms of Tier 1 testing could serve as models and partners with other states launching screening and surveillance programs. A multidisciplinary team of screening program champions was suggested as a means of raising awareness among the consumer and health care communities. Participants offered multiple recommendations regarding use of electronic health records, including flagging of at-risk family members and utilization of state-level health information exchanges. The paper contains an update of policy developments and happenings for all three Tier 1 conditions, as well as identified gaps. CONCLUSIONS: Implementation of cascade screening of family members for HBOC and FH, and universal screening for LS in CRC tumors has reached a point of readiness within the U.S., with creative solutions at hand. Facilitating factors such as screening coverage through the Patient Protection and Affordable Care Act, and state health information exchanges can be tapped. Collaboration is needed between public health departments, health care systems, disease advocacy groups, and industry to fully realize Tier 1 genetic screening. State health department and disease networks currently engaged in Tier 1 screening can serve as models for the launch of new initiatives.

Metodologia e indicadores para monitoramento da NBCAL em estabelecimentos comerciais e serviços de saúde: estudo multicêntrico (Multi-NBCAL) / Metodología e indicadores para el monitoreo de la NBCAL en establecimientos comerciales y servicios de salud: estudio multicéntrico (Multi-NBCAL) / Methodology and indicators for NBCAL monitoring in stores and health services: a multicenter study (Multi-NBCAL)

A Norma Brasileira de Comercialização de Alimentos para Lactentes e Crianças de Primeira Infância, Bicos, Chupetas e Mamadeiras (NBCAL), vigente no Brasil desde 1988, ainda é sistematicamente infringida, expondo mães e familiares ao marketing ilegal de produtos que competem com o aleitamento materno. O objetivo foi descrever metodologia de estudo multicêntrico e propor indicadores padronizados para monitoramento da NBCAL. Estudo Multicêntrico para Monitoramento da NBCAL (Multi-NBCAL) conduzido em sete cidades brasileiras: Rio de Janeiro; São Paulo; Ouro Preto (Minas Gerais); Florianópolis (Santa Catarina); Brasília (Distrito Federal); João Pessoa (Paraíba) e Belém (Pará). Instrumentos de avaliação foram adaptados do NetCode/WHO e da IBFAN Brasil (Rede Internacional em Defesa do Direito de Amamentar) para condução de dois inquéritos: (1) avaliação do cumprimento da NBCAL em estabelecimentos comerciais e das práticas e conhecimento dos seus gerentes sobre a NBCAL; (2) avaliação em maternidades da interação da indústria de alimentos infantis com profissionais de saúde e mães. Foram elaborados cinco indicadores para avaliação do cumprimento da NBCAL em estabelecimentos comerciais; sete indicadores para avaliar conhecimentos e práticas dos seus responsáveis; cinco indicadores para avaliar a oferta de incentivos a maternidades, profissionais de saúde e mães pelas indústrias e cinco indicadores para avaliar conhecimento e práticas de profissionais de saúde quanto à NBCAL. A metodologia de avaliação da NBCAL, com a proposta de indicadores padronizados, permite a comparabilidade de estudos sobre o tema. A utilização desses indicadores em inquéritos periódicos, nacionais ou regionais, pode contribuir para monitorar o grau de implementação da NBCAL no Brasil.

La Norma Brasileña de Comercialización de Alimentos para Lactantes y Niños en la Primera Infancia, Tetillas, Chupetes y Biberones (NBCAL), vigente en Brasil desde 1988, todavía es sistemáticamente infringida, exponiendo a madres y familiares al marketing ilegal de productos que compiten con la lactancia materna. El objetivo fue describir la metodología de estudio multicéntrico y proponer indicadores estandarizados para el monitoreo de la NBCAL. Estudio Multicéntrico para Monitoreo de la NBCAL (Multi-NBCAL) llevado a cabo en siete (7) ciudades brasileñas: Río de Janeiro; São Paulo; Ouro Preto (Minas Gerais); Florianópolis (Santa Catarina); Brasilia (Distrito Federal); João Pessoa (Paraíba) y Belém (Pará). Se adaptaron instrumentos de evaluación del NetCode/OMS y de la IBFAN Brasil (Red Internacional de Acción por la Alimentación Infantil)para la realización de dos encuestas: (1) evaluación del cumplimiento de la NBCAL en establecimientos comerciales y de las prácticas y conocimiento de sus gerentes sobre la NBCAL; (2) evaluación en maternidades de la interacción de la industria de alimentos infantiles con profesionales de salud y madres. Se elaboraron cinco indicadores para la evaluación del cumplimiento de la NBCAL en establecimientos comerciales; siete indicadores para evaluar conocimientos y prácticas de sus responsables; cinco indicadores para evaluar la oferta de incentivos a maternidades, profesionales de salud y madres por las industrias y cinco indicadores para evaluar el conocimiento y prácticas de profesionales de salud, respecto a la NBCAL. La metodología de evaluación de la NBCAL, con la propuesta de indicadores estandarizados, permite la comparabilidad de estudios sobre el tema. La utilización de estos indicadores en encuestas periódicas, nacionales o regionales, puede contribuir a monitorear el grado de implementación de la NBCAL en Brasil.

The Brazilian Code of Marketing of Infant and Toddlers Food, Nipples, Pacifiers and Baby Bottles (NBCAL), in force in Brazil since 1988, is still systematically violated, exposing mothers and family members to illegal marketing of products that compete with breastfeeding. This study aimed to describe a multicenter study methodology and propose standardized indicators for NBCAL monitoring. This is a Multicenter Study for NBCAL Compliance Assessment (Multi-NBCAL) conducted in seven Brazilian cities: Rio de Janeiro, São Paulo, Ouro Preto (Minas Gerais State), Florianópolis (Santa Catarina State), Brasília (Federal District), João Pessoa (Paraíba State), and Belém (Pará State). Assessment tools were adapted from NetCode/WHO and IBFAN Brazil (International Baby Food Action Network) to conduct two evaluations: (1) evaluation of NBCAL compliance in stores, and NBCAL knowledge and practices of store managers; (2) evaluation of the interaction between the baby food industry and health professionals and post-partum mothers in maternity hospitals. Five indicators were developed to assess NBCAL compliance in stores; seven indicators to assess the knowledge and practices of store managers; five indicators to assess the provision of incentives to maternity hospitals, health professionals, and mothers by sectors; and five indicators to assess NBCAL knowledge and practices of health professionals. The NBCAL assessment methodology with the proposal of standardized indicators allows comparability of studies about this theme. Using these indicators in periodic national or regional investigation can help monitor the level of NBCAL implementation in Brazil.

A inter-relação do acidente de consumo e assistência à saúde: revisão integrativa / The interrelation of consumer accidents and health assistance: integrative review / La interrelación de los accidentes del consumidor y la asistencia a la salud: revisión integradora

Objetivo: Analisar a produção científica acerca da inter-relação entre consumidor, produto e assistência à saúde. Método: Trata-se de uma Revisão Integrativa da Literatura realizada nas bibliotecas e bases de dados: BVS, PubMed, Scielo e Portal de Periódicos CAPES. Foram arrolados dez estudos após a aplicação dos descritores não controlados: "consumidor/ consumer", "acidente / acident" combinados pelo operador booleano "AND" e dos respectivos critérios de inclusão e exclusão. Resultados: A análise dos estudos selecionados possibilitou que três categorias emergissem: Principais fatores que levam a ocorrência de acidentes de consumo; Métodos de prevenção dos acidentes de consumo; e, O papel da equipe de saúde na prevenção dos acidentes de consumo. Conclusão: Nesse viés, compreende-se a importância da articulação para estratégias de prevenção de acidentes de consumo, sobretudo, no que se refere ao promissor papel da equipe de saúde neste âmbito, no que tange à educação para prevenção e avaliações para aperfeiçoamento dos produtos.

Objective: to analyze the scientific production on the interrelationship between consumer, product and health. Method: this is an Integrative Literature Review carried out in the libraries and databases: VHL, PubMed, Scielo and Portal do Jornal CAPES. Two studies were found after application of two uncontrolled descriptors: "consumidor/ consumer", "acidente/acident" combined with the recommended Boolean operator "AND" and two respective inclusion and exclusion criteria. Results: When analyzing two selected studies, it is possible that three categories may arise: Main factors that lead to the occurrence of consumption accidents, Methods for the prevention of two consumption accidents, Or the role of the health team in the prevention of two consumption accidents. Conclusion: In this regard, it is understood the importance of articulation for consumer accident prevention strategies, especially not referring to the promising role of the health team in this area, not involving prevention education and evaluations for the improvement of two products

Objetivo: Analizar la producción científica sobre la interrelación entre consumidor, producto y cuidado a la salud. Método: Se trata de una Revisión Integrativa de Literatura realizada en las bibliotecas y bases de datos: BVS, PubMed, Scielo y Portal de Periódicos CAPES. Fueron registrados diez estudios tras la aplicación de los descriptores no controlados: "consumidor/ consumer", "acidente / acident", combinados por el operador booleano recomendado "AND" y los respectivos criterios de inclusión y exclusión. Resultados: El análisis de los estudios seleccionados permitió emerger tres categorías: Principales factores que conducen a la ocurrencia de accidentes de consumo, Métodos de prevención de accidentes de consumo, El papel del equipo de salud en la prevención de accidentes de consumo. Conclusión: En este contexto, se comprende la importancia de la articulación para las estrategias de prevención de accidentes del consumo, especialmente en lo que respecta al rol prometedor del equipo de salud en esta área, en lo que corresponda a la educación para la prevención y las evaluaciones para mejorar los productos.