Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network

Background: Surveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control. Methods and Findings: SN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software applicaction we made available in a “Facebook-like” environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007–2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85). Conclusions: Success within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.Centers for Disease Control and Prevention (U.S.) (P01HK000088-01)Centers for Disease Control and Prevention (U.S.) (P01HK000016 )National Institute of Alcohol Abuse and Alcoholism (U.S.) (R21 AA016638-01A1)National Center for Research Resources (U.S.) (1U54RR025224-01)Children's Hospital (Boston, Mass.) (Program for Patient Safety and Quality

Sexualidade e câncer de mama: uma revisão sistemática da literatura

O objetivo deste estudo foi compreender como o câncer de mama e seus tratamentos afetam a vivência da sexualidade da mulher acometida. Foi realizada uma revisão sistemática qualitativa de artigos científicos, publicados entre 2000 e 2010, disponíveis nas bases de dados PubMed, Web of Science, LILACS e SciELO. Foram obtidos 50 artigos cujos textos foram categorizados segundo análise de conteúdo temática. Foram identificadas seis categorias temáticas: a cirurgia mamária e os demais tratamentos para o câncer de mama; a experiência da mulher acometida; o relacionamento afetivo-sexual; estudos sobre relação entre sexualidade e características específicas do câncer; os profissionais de saúde e a atenção à sexualidade; e propostas para amenizar as consequências negativas dos tratamentos na sexualidade. Há necessidade de novos estudos a respeito dos aspectos culturais da sexualidade, diversidade sexual, relacionamento com o parceiro, formação do profissional de saúde e intervenções em sexualidade no contexto do câncer de mama

Responsibility as an Obstacle to Good Policy: The Case of Lifestyle Related Disease

People are causally responsible for many of their own problems. Indeed, in the arena of healthcare, up to 40% of premature deaths are preventable by changes to lifestyle (Yoon et al. 2014). The biggest causes of lifestyle-related morbidity and mortality are behaviors which are widely known to be unhealthy (smoking, unhealthy diets, lack of exercise and excessive drinking). These facts make the following inference prima facie plausible: if agents are causally responsible for their ill-health, and the causes are voluntary behaviors they know to be linked to ill-health, they are also morally responsible for their ill-health. That conclusion need not be taken to entail that they are not entitled to healthcare, say. However, it (plausibly) has some practical import. It may, for instance, bear on how their entitlements are to be weighed against those of others who are not responsible for their ill-health, when it comes to the allocation of scarce resources