Bibliotecários e os desafios da Ciência Aberta: habilidades, recursos e serviços / Librarians and the challenges of Open Science: skills, resources and services / Bibliotecarios y los desafíos de la Ciencia Abierta: habilidades, recursos y servicios

Este estudo tem como objetivo identificar, na literatura científica, produtos e serviços desenvolvidos por bibliotecários vislumbrando as práticas de Ciência Aberta. A questão principal é identificar: qual o papel dos bibliotecários frente aos desafios da Ciência Aberta? Predominantemente qualitativa, esta pesquisa pode ser caracterizada como bibliográfica, exploratória e descritiva. Para atingir seu objetivo, utilizou-se a técnica de revisão rápida de literatura. Foi realizado um levantamento de publicações indexadas na Brapci, na Scopus e na Web of Science, sendo recuperadas três publicações em cada. Ao excluir um título que se repetiu, o corpus da pesquisa configurou-se com seis artigos e dois resumos apresentados em evento. Conclui-se que debates sobre o novo modus operandi de fazer ciência vêm aumentando e os bibliotecários parecem intimamente relacionados às ações de Ciência Aberta nas diversas etapas da pesquisa científica. Devido às suas habilidades e aos seus serviços, entende-se que exercem um dos papéis centrais na concretização da abertura da ciência.

This study aims to identify, in the scientific literature, products and services developed by librarians with a view to Open Science practices. The main question is to identify: what role is played by librarians facing the challenges of Open Science? Predominantly qualitative, this research can be characterized as bibliographic, exploratory, and descriptive. To achieve its objective, a rapid literature review technique was used. A survey of publications indexed in Brapci, Scopus and Web of Science was carried out, and three publications from each were retrieved. After excluding one title that was repeated, the research corpus consisted of six articles and two abstracts presented at an event. We conclude that debates about the new modus operandi of doing science have been increasing and librarians seem closely related to Open Science actions in the various stages of scientific research. Because of their skills and services, they play one of the central roles to achieve the opening of science.

Este studio tiene como objetivo identificaren la literature científica los productos y servicios desarrollados por los bibliotecarios com vistas a las prácticas de la Ciencia Abierta. La cuestión principal es identificar: ¿ cuál es el papel de los bibliotecarios ante los desafíos de la Ciencia Abierta? Predominantemente cualita-tiva, esta investigación puede caracterizar se como bibliográfica, exploratoria y descriptiva. Para lograr su objetivo, se utilizó la técnica de revision rápida de la literatura. Se realizó un estudio de las publicaciones indexadas en Brapci, Scopus y Web of Science, recuperándo se tres publicaciones en cada una de ellas. Al excluir un título repetido, el corpus de la investigación quedó configurado con seis artículos y dos resúmenes presentados en un evento. Concluimos que los debates sobre el nuevo modus operandi de hacer ciencia han aumentado y los bibliotecarios parecen estar estrechamente relacionados con las acciones de la Ciencia Abierta en las distintas etapas de la investigación científica. Por sus habilidades y servicios, se entiende que ejercen uno de los papeles centrales en la realización de la Ciencia Abierta.

Development of a job-exposure matrix-like exposure assessment method for the US general population based on Occupational Information Network (O*NET) job tasks.

BACKGROUND: Job-exposure matrices (JEMs) are often used for exposure assessment in occupational exposure and epidemiology studies. However, general population JEMs are difficult to find and access for workers in the United States of America. OBJECTIVE: We aimed to use publicly available information to develop a JEM-like exposure assessment method to determine exposure to a wide range of occupational agents in a wide range of occupations for US general population studies. METHODS: We used information from the US Department of Labor's Occupational Information Network database (O*NET) for 19,636 job tasks and 974 civilian occupations. We used automated keyword searches to identify 1,804 job tasks that involved exposure to 50 occupational agents. We had 2 reviewers determine whether each identified job task actually involved exposure to the 50 occupational agents. We had a third reviewer, a certified industrial hygienist, assess any job task and exposure for which the first 2 reviewers disagreed. For each U.S. Census 2010 occupation code, we used this information to derive 3 exposure variables for each occupational agent: ever exposure, number of job tasks of exposure, and frequency of exposure. RESULTS: Our keyword searches identified a median of 10 (interquartile range [IQR]: 43.75) job tasks for each occupational agent, and the maximum was 308. We determined job tasks actually involved exposure to 45 occupational agents, including solvents, air pollution, pesticides, radiation, metals, etc. We derived the 3 exposure variables for these 45 occupational agents for 516 U.S. Census 2010 occupation codes. The median percentage for ever exposure to individual occupational agents was 1.16% (IQR: 1.74%), and the maximum was 11.43%. CONCLUSIONS: Our JEM-like exposure assessment method based on O*NET information can be used to determine exposure to a wide range of occupational agents in a wide range of occupations for the US general population.

Using a six-step co-design model to rapidly respond to cancer carers support and information needs during a global pandemic.

OBJECTIVES: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support. METHODS: The Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically. RESULTS: A COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring. CONCLUSIONS: During a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.

Between hope and reality: How oncology physicians and information providers of a cancer information service manage patients' expectations for and experiences with immunotherapies.

OBJECTIVES: Immune checkpoint inhibitors have established themselves as a further therapeutic pillar in the treatment of various types of cancer. This can create challenges and possible misunderstandings for patients. The aim of this study was to assess the experiences of physicians and information providers in their interactions with patients about immunotherapy. METHODS: The study design was exploratory with qualitative research methodology. We performed focus groups with 8 oncology physicians and 9 information providers of a cancer information service. RESULTS: In the coding process, five focal points could be identified: (1) image of immunotherapy, (2) presentation of immunotherapy in the media, (3) hope, (4) creation of an information base, and (5) lessons learned and future directions. Physicians and information providers report that immunotherapy has a very positive image among patients. This seems to be due to the presentation of immunotherapy in the media and the positive associations of people with terms such as the immune system and the body's own defense. CONCLUSIONS: In contrast to chemotherapy, patients are at risk of underestimating the early symptoms of serious side effects of immunotherapy. From the point of view of physicians, the exaggerated expectations of patients regarding the possibilities of immunotherapy are often not met. The challenge for practitioners is to consider patients' expectations to provide balanced information and recommendations. PRACTICAL IMPLICATIONS: Communication skills training and up-to-date information tools should improve physician-patient communication.

Understanding the Pathway of Cancer Information Seeking: Cancer Information Services as a Supplement to Information from Other Sources.

Cancer information services (CISs) can play an important role within the pathway of cancer information seeking, but so far, this role is not well understood. Callers (n = 6,255) who contacted the largest provider of cancer information in Germany participated in a survey in which they reported their information sources, information level, and needs leading to the call. Persons with prior information from a physician (n = 1,507) were compared to people with prior online information (n = 901) and people with prior information from both sources (n = 2,776). Nearly all callers (96.7%) stated prior sources, while physicians and the Internet were the most frequently reported sources. People, who only talked to a doctor before, are more likely to be a patient and in the disease stages during/after the first treatment or with recurrence than prior Internet users. The two groups do not differ in their prior information level but did differ in their information needs. CISs are an important supplement to other sources, while the information repertoire depends on patients' stages during the cancer journey. Specific characteristics and needs of callers with different prior information sources help to individualize the service of CISs and similar providers.

Childhood Cancer Information-Seeking: Findings from the National Cancer Institute's Cancer Information Service.

The benefits of cancer information-seeking may be particularly salient to individuals impacted by childhood cancer, including patients, caregivers, health professionals, and advocates. The purpose of this study was to explore information-seeking patterns for childhood cancer through the National Cancer Institute's Cancer Information Service (CIS), a multi-channel, bilingual resource for cancer information. The study team conducted descriptive analyses on secondary data characterizing 1820 caregivers, health professionals, organizations, and members of the general public who contacted the CIS about childhood cancer between September 2018 and June 2022. Almost 80% of inquiries about childhood cancer were initiated by caregivers, followed by the public, health professionals, and organizations. Although English was the primary language used by individuals to reach the CIS when discussing childhood cancer, there were variations in points of access (i.e., telephone, instant messaging, email, social media) across the four user groups. Most childhood cancer inquiries were about staging and treatment, and the primary cancer sites discussed by CIS users were neurologic or brain, hematologic, and musculoskeletal cancers. Discussion topics included managing and coping with cancer, clinical trials, and treatment side effects. Just over half (54%) of CIS contacts about childhood cancer resulted in a health professional referral. Findings provide direction for the CIS and other public health organizations to deliver, prioritize, and tailor their services to support the information needs of childhood cancer survivors and their families-as well as those who care and advocate for them-who may have a significant need for credible cancer information.

Reflexões sobre o trabalho on-line da neuropsicologia infantil numa visão histórico-cultural / Reflections on the online work of child neuropsychology from a cultural-historical perspective / Reflexiones sobre el trabajo online de la neuropsicología infantil desde una perspectiva histórico-cultural

O isolamento social provocado pela pandemia de covid-19 exigiu uma intensificação no estabelecimento de parâmetros para o trabalho do neuropsicólogo com suas especificidades. Assim, o objetivo deste artigo é levantar reflexões sobre a prática neuropsicológica infantil via internet baseada na nossa experiência prática vivenciada no período, relacionando com as referências teóricas da abordagem histórico-cutural e outros trabalhos que discorrem sobre as particularidades dessa modalidade de atendimento. Para isso, foi realizada uma pesquisa bibliográfica em fontes reconhecidas, como SciELO e Google Acadêmico, utilizando-se marcadores como "neuropsicologia on-line" e "teleneuropsicologia", entre outros, em português, inglês e espanhol. Os trabalhos encontrados foram utilizados como fundamento para discutir as ideias aqui apresentadas, a partir da experiência dos autores durante esse período. Considera-se que os neuropsicólogos precisam enfrentar a possível necessidade do trabalho on-line, considerando que as situações vividas durante a pandemia tendem a aumentar a necessidade de avaliações e intervenções neuropsicológicas. Ao mesmo tempo, se prevê que essa via de trabalho deve se intensificar após o isolamento, dentro do que se tem denominado como "o novo normal". Para isso, é essencial que haja esforço por parte da comunidade neuropsicológica para mostrar como essa área de trabalho pode ser útil para crianças, seus pais e professores. Conclui-se que é preciso ter a noção de que nenhuma via ou metodologia de trabalho é absolutamente completa, sendo essencial a instrumentalização das vantagens e desvantagens de todas elas.(AU)

The social isolation caused by the COVID-19 pandemic demanded intensification in the establishment of parameters for the neuropsychologist's work with its specificities. Thus, the aim of this article is to raise reflections on child neuropsychological practice via the internet, based on our practical experience in this period, relating to the theoretical references of the cultural-historical approach and other works that discuss the particularities of this type of care. For this, a bibliographic research was carried out in recognized sources such as SciELO and Google Scholar, using markers such as "online neuropsychology" and teleneuropsychology, among others, in Portuguese, English and Spanish. The works found were used as a basis for discussing the ideas presented here which are based on the authors' experience during this period. It is considered that neuropsychologists need to face the possible need for online work, considering that situations experienced during the pandemic tend to increase the need for neuropsychological assessments and interventions. At the same time, it is expected that this work path should intensify after isolation, within of what has been called "the new normal". For this, an effort by the neuropsychological community is essential to show how this area of work can be useful for children, their parents and teachers. It is concluded that it is necessary to have the notion that no way or work methodology is absolutely complete, being essential the instrumentalization of the advantages and disadvantages of all of them.(AU)

El aislamiento social provocado por la pandemia de Covid-19 exigió una intensificación en el establecimiento de parámetros para el trabajo del neuropsicólogo con sus especificidades. Así, el objetivo de este artículo es plantear reflexiones sobre la práctica neuropsicológica infantil a través de internet, a partir de nuestra experiencia práctica en este período, en relación con los referentes teóricos del enfoque histórico-cultural y otros trabajos que discuten las particularidades de este tipo de cuidado. Para esto, se realizó una investigación bibliográfica en fuentes reconocidas como SciELO y Google Académico, utilizando marcadores como "neuropsicología en línea" y teleneuropsicología, entre otros, en portugués, inglés y español. Los trabajos encontrados sirvieron de base para discutir las ideas aquí presentadas a partir de la experiencia de los autores durante este período. Se considera que los neuropsicólogos necesitan enfrentar la posible necesidad de trabajo en línea, considerando que las situaciones vividas durante la pandemia tienden a incrementar la necesidad de evaluaciones e intervenciones neuropsicológicas. Al mismo tiempo, se espera que esta vía de trabajo se intensifique después del aislamiento, dentro de lo que se ha denominado "la nueva normalidad". Para esto, un esfuerzo de la comunidad neuropsicológica es fundamental para mostrar cómo esta área de trabajo puede ser útil para los niños, sus padres y profesores. Se concluye que es necesario tener la noción de que ninguna vía o metodología de trabajo es absolutamente completa, siendo imprescindible la instrumentalización de las ventajas y desventajas de todas ellas.(AU)

La Ciencia versus la desinformación de las noticias falsas o "Fake News" / A Ciência versus desinformação de notícias falsas ou "Fake News" / Science versus misinformation from fake news

Cuidar de la salud durante la infancia y adolescencia es el objetivo principal de la Odontopediatría, teniendo siempre como principio una visión integral del individuo. Esta meta tiene un apoyo importante en la difusión del conocimiento, que sea de fácil acceso para las familias y para los niños. ALOP ha participado activamente en este esfuerzo de difusión de información científica de calidad, a través de las publicaciones basadas en la mejor evidencia disponible, trabajada por el grupo de expertos del Equipo Interdisciplinado ALOP. Esto no sólo para la comunidad científica, sino también para el público general en lenguaje simple y acceso abierto. Por supuesto, muchas personas contribuyeron a estos esfuerzos. Agradecemos a todos nuestros colaboradores y a nuestra legión de revisores de todo el mundo que fueron actores importantes para brindar evidencia en tiempo real a los colegas de odontología pediátrica. Con esta comunicación efectiva y el amplio compromiso entre investigadores y profesionales de la salud, estamos unidos para generar confianza entre las personas en las fuentes y servicios de información de salud. Esperamos seguir contando con el trabajo desinteresado y compromiso de todos los investigadores y de todos los lectores, en la difusión de información con alto valor científico, contrarrestando la presncia de "fake news" y generando un impacto positivo en la salud de nuestros niños.

Cuidar da saúde na infância e adolescência é o principal objetivo da Odontopediatria, tendo sempre como princípio uma visão integral do indivíduo. Para esta meta é importante um apoio na disseminação do conhecimento, que seja de fácil acesso às famílias e crianças. A ALOP tem participado ativamente neste esforço de divulgação de informação científica de qualidade, através de publicações baseadas na melhor evidência disponível, trabalhada pelo grupo de especialistas da Equipe Interdisciplinar da ALOP. Isso não é apenas para a comunidade científica, mas também para o público em geral em linguagem simples e de acesso aberto. Claro, muitas pessoas contribuíram para esses esforços. Somos gratos a todos os nossos colaboradores e à nossa legião de revisores em todo o mundo, que têm sido participantes importantes em trazer evidências em tempo real para colegas odontopediatras. Com essa comunicação efetiva e amplo engajamento entre pesquisadores e profissionais de saúde, estamos unidos na construção da confiança entre as pessoas nas fontes e serviços de informação em saúde. Esperamos continuar a contar com o trabalho abnegado e empenho de todos os investigadores e de todos os leitores, na divulgação de informação de elevado valor científico, contrariando a presença de "fake news" e gerando um impacto positivo na saúde das nossas crianças.

The main objective of pediatric dentistry is to take care of children and adolescents' health, always based on a comprehensive vision of the individual. This goal is significantly supported by the dissemination of knowledge that is easily accessible to families and children. ALOP has actively participated in the dissemination of quality scientific information through publications based on the best available evidence, worked on by the interdisciplinary team of experts of ALOP. This is not only for the scientific community but also for the general public in simple language and open access. Of course, many people have contributed to these efforts. We thank all our collaborators and our legion of reviewers from around the world who were important actors in providing evidence in real-time to colleagues in pediatric dentistry. With this effective communication and broad commitment among researchers and health professionals, we are united in generating trust among people in health information sources and services. We hope to continue to count on the selfless work and commitment of all researchers and all readers in the dissemination of information with high scientific value, countering the presence of "fake news" and generating a positive impact on the health of our children.

Adaptação de um programa de prevenção à violência contra criança para versão remota / Adaptation of a program to prevent violence against children into a remote model / Adaptación de un programa de prevención de la violencia contre el niño para una versión remota

Trata-se de um estudo transversal sobre o processo de adaptação do Programa ACT paraEducar Crianças em Ambientes Seguros para a versão remota. O processo de adaptação foi constituído por quatro etapas: (1) elaboração do roteiro com as adaptações para a aplicação na versão remota, (2) avaliação da proposta por seis juízas especialistas; (3) realização de modificações e alterações necessárias, e; (4) integração dos resultados para desenvolvimento da versão final. Os dados foram analisados de maneira quantitativa e qualitativa. As modificações do Programa ACT na versão remota foram consideradas adequadas pelas juízas, sendo realizadas adaptações de atividades por meio de plataformas digitais, como Google Meet, Google Forms, entre outras. Foi sugerido que contatos com entidades governamentais e não-governamentais fossem realizados a fim de incluir pais e cuidadores que não possuíssem acesso a equipamento e suporte tecnológico. A versão remota possibilitará disseminar o programa, incluindo cuidadores de diferentes locais do Brasil (AU).

This is a transversal study about the process of adapting the ACT Raising Safe Kids Program to a remote version. The adaptation process consisted of four stages: (1) elaboration of the script with adaptations for application in the remote version; (2) evaluation of the proposal by six expert judges; (3) necessary modifications and alterations; and (4) integration of the results as part of the development of the final version. The results were analyzed quantitatively and qualitatively. The modifications of the ACT Program in the remote version were considered adequate by the judges, with adaptations of activities being carried out through digital platforms, such as Google Meet, Google Forms, among other digital platforms. A suggestion was made regarding contacting governmental and non-governmental entities in order to include parents and caregivers who do not have access to equipment and technological support. This remote version willmake possible the wide dissemination of the program, including caregivers from different parts of Brazil (AU).

Se trata de un estudio transversal sobre el proceso de adaptación del Programa de ACT para Educar Niños en Ambientes Seguros para la versión remota. El proceso de adaptación fue constituido por cuatro etapas: (1) elaboración del guion con las adaptaciones para la aplicación en la versión remota; (2) evaluación de la propuesta por seis jueces especialistas; (3) realización de modificaciones y alteraciones necesarias; y (4) integración de los resultados para desarrollo de la versión final. Los datos fueron analizados de manera cuantitativa y cualitativa. Las modificaciones del Programa de ACT en la versión remota fueron consideradas adecuadas por las juezas, siendo realizadas adaptaciones de actividades por medio de plataformas digitales, como Google Meet, Google Forms, entre otras. Fue sugerido que contactos con entidades gubernamentales y no gubernamentales fueran realizados a fin de incluir padres y cuidadores que no tuvieran acceso a equipo y soporte tecnológico. La versión remota posibilitará diseminar ampliamente el programa, incluyendo cuidadores de diferentes lugares de Brasil (AU).

Impact of modifiable reproductive factors on cancer incidence and mortality in Korea: a systematic review protocol.

INTRODUCTION: Cancer is a leading cause of death worldwide. In Korea, it is also a major public health problem. Cancer burden may increase significantly due to ageing population and changes in lifestyle. The features of reproductive factors have changed, which include increased age at first childbirth and decreased breastfeeding duration. This study aims to systematically summarise the association between modifiable reproductive factors and cancer incidence and mortality to provide evidence for planning strategies aimed at reducing cancer incidence and mortality in women. METHODS AND ANALYSIS: A literature search was performed using the EMBASE, MEDLINE, Cochrane Library and Korean databases such as the Korean Studies Information Service System, Research Information Sharing Service, KoreaMED, Korean Medical Database, National Assembly Library and Korea Institute from their inception to 24 August 2022. We will include cohort studies addressing the associations between at least one of the reproductive factors and the incidence and mortality of all or specific cancers among Korean women. Two reviewers will screen the references, extract the data, and assess the risk of bias independently and in duplicates. Discrepancies will be resolved through discussion or consultation with a third-party reviewer. We will use the Grading of Recommendations, Assessment, Development and Evaluation approach to evaluate the certainty of evidence. We will summarise the findings of the included systematic reviews through quantitative or narrative syntheses and present the summarised findings in tables. ETHICS AND DISSEMINATION: Ethical approval is not required, since we will use only the published data. We will disseminate the study findings in peer-reviewed publications. PROSPERO REGISTRATION NUMBER: CRD42022356085.

Estudo do perfil epidemiológico da tuberculose na população idosa no estado de São Paulo entre os anos de 2018-2020 / Study of the epidemiological profile of tuberculosis in the elderly population in the state of São Paulo between the years 2018-2020 / Estudio del perfil epidemiológico de la tuberculosis en la población anciana del estado de São Paulo entre los años 2018- 2020

A tuberculose e um doença que causa preocupação para as autoridades de saúde pública. Quando analisamos o envelhecimento da população, os idosos são mais susceptíveis a várias doenças, entre elas a tuberculose. Um dos motivos dessa fragilidade na saúde e devido a sua imunossenescência, além das comorbinadas frequentes nesse grupo etário. Desta forma, objetivou realizar uma pesquisa quantitativa, descritiva, realizada por bases secundárias de dados online, no qual foram utilizados o Serviço de Informação do Sistema Único de Saúde (DATASUS). Na pessquisa, foram inclusas pessoas de ambos os sexos com idade igual ou superior a 60 anos e com diagnóstico de Tuberculose no Estado de São Paulo entre os anos de 2018 a 2020. Nesta pesquisa pode se observar uma elevada ocorrência de tuberculose na população idosa principalmente no sexo masculino. Em relação a faixa etária com maior contaminados pela tuberculose foi entre 60-64 anos já a faixa etária com grande número de óbitos ocorreu 70-79 anos, por causa dessa doença.

Tuberculosis is a disease of concern to public health authorities. When we analyze the aging of the population, the elderly are more susceptible to several diseases, including tuberculosis. One of the reasons for this fragility in health is due to its immunosenescence, in addition to the frequent co-morbidities in this age group. In this way, it aimed to carry out a quantitative, descriptive research, carried out by secondary online databases, in which the Information Service of the Unified Health System (DATASUS) was used. In the research, people of both sexes aged 60 years or older and diagnosed with tuberculosis in the State of São Paulo between the years 2018 to 2020 were included. in male. Regarding the age group with the highest number of tuberculosis infections, it was between 60-64 years old, while the age group with a large number of deaths occurred between 70-79 years old, because of this disease.

La tuberculosis es una enfermedad que preocupa a las autoridades de salud pública. Cuando analizamos el envejecimiento de la población, los ancianos son más susceptibles de padecer diversas enfermedades, entre ellas la tuberculosis. Una de las razones de esta fragilidad en la salud se debe a su inmunosenescencia, además de las frecuentes comorbilidades en este grupo de edad. De esta forma, se pretendía realizar una investigación cuantitativa, descriptiva, realizada por bases secundarias de datos online, en las que se utilizó el Servicio de Información del Sistema Único de Salud (DATASUS). En la investigación se incluyeron personas de ambos sexos con 60 años o más y diagnosticadas de Tuberculosis en el Estado de São Paulo entre los años 2018 y 2020. En esta investigación se puede observar una alta ocurrencia de tuberculosis en la población de edad avanzada, especialmente en los varones. En relación con el grupo de edad con mayor contaminación por tuberculosis fue entre 60-64 años ya el grupo de edad con un gran número de muertes se produjo 70- 79 años, a causa de esta enfermedad.

Breast cancer patient characterisation and visualisation using deep learning and fisher information networks.

Breast cancer is the most commonly diagnosed female malignancy globally, with better survival rates if diagnosed early. Mammography is the gold standard in screening programmes for breast cancer, but despite technological advances, high error rates are still reported. Machine learning techniques, and in particular deep learning (DL), have been successfully used for breast cancer detection and classification. However, the added complexity that makes DL models so successful reduces their ability to explain which features are relevant to the model, or whether the model is biased. The main aim of this study is to propose a novel visualisation to help characterise breast cancer patients using Fisher Information Networks on features extracted from mammograms using a DL model. In the proposed visualisation, patients are mapped out according to their similarities and can be used to study new patients as a 'patient-like-me' approach. When applied to the CBIS-DDSM dataset, it was shown that it is a competitive methodology that can (i) facilitate the analysis and decision-making process in breast cancer diagnosis with the assistance of the FIN visualisations and 'patient-like-me' analysis, and (ii) help improve diagnostic accuracy and reduce overdiagnosis by identifying the most likely diagnosis based on clinical similarities with neighbouring patients.

Improvement in Age at Mortality and Changes in Causes of Death in the Population with Diabetes: An Analysis of Data from the Korean National Health Insurance and Statistical Information Service, 2006 to 2018.

BACKGRUOUND: Diabetes is a leading cause of death that is responsible for 1.6 million annual deaths worldwide. However, the life expectancy and age at death of people with diabetes have been a matter of debate. METHODS: The National Health Insurance Service claims database, merged with death records from the National Statistical Information Service in Korea from 2006 to 2018, was analyzed. RESULTS: In total, 1,432,567 deaths were collected. The overall age at death increased by 0.44 and 0.26 year/year in the diabetes and control populations, respectively. The disparity in the mean age at death between the diabetes and control populations narrowed from 5.2 years in 2006 to 3.0 years in 2018 (p<0.001). In a subgroup analysis according to the presence of comorbid diseases, the number and proportion of deaths remained steady in the group with diabetes only, but steadily increased in the groups with diabetes combined with dyslipidemia and/or hypertension. Compared to the control population, the increase in the mean death age was higher in the population with diabetes. This trend was more prominent in the groups with dyslipidemia and/or hypertension than in the diabetes only group. Deaths from vascular disease and diabetes decreased, whereas deaths from cancer and pneumonia increased. The decline in the proportion of deaths from vascular disease was greater in the diabetes groups with hypertension and/or dyslipidemia than in the control population. CONCLUSION: The age at death in the population with diabetes increased more steeply and reached a comparable level to those without diabetes.

Preferred and perceived participation roles of oncological patients in medical decision-making: Results of a survey among users of the German Cancer Information Service.

BACKGROUND: Cancer patients are facing a variety of treatment and other disease-related decisions. This study aims to provide insights into preferred and perceived participation roles in decision-making among patients with diverse tumors using the German Cancer Information Service (CIS). METHODS: Patients' decision-making preferences and experiences were assessed as a part of a cross-sectional survey among CIS users. An adapted version of the Control Preferences Scale (CPS) was used to assess preferred and perceived participation roles in eight different areas of medical decision-making (e.g., choice of medication, termination of treatment). Logistic regression analyses were applied to explore preference matching and to analyze associations between participation roles and sociodemographic variables. Moreover, we examined preferences and perceptions of participation roles across different decision situations. RESULTS: In the final sample (N = 1566, 64.9% female, mean age = 61.6), almost half of the patients (47.1%) preferred to take a collaborative role in decisions on treatment methods, whereas 36.3% preferred an active role and 15.9% a passive role. Collaborative role preferences frequently (40.7%) coincided with experiencing a passive role and predicted a reduced chance of a match between preferences and experiences (OR = 0.57, p = .001). A higher level of education was associated with a lower chance of preferring and perceiving a passive role (OR = 0.85, p < .01). Compared with men, women had increased odds of preferring (OR = 1.45, p < .05) and of actually taking (OR = 2.04, p < .001) a passive role in medical encounters. Preferred participation roles regarding treatment methods were highly correlated with preferences in all other decision areas (r > .50, p < .001) except decisions about family involvement. CONCLUSIONS: The study reveals well-known deficits in the fulfilment of patients' collaborative role preferences across different areas of medical decision-making in a sample of CIS users characterized by high information-seeking behavior. Participation roles were not only influenced by the patients' level of education but also by their gender. The gender effect may be more pronounced than previous studies suggest. These effects should be considered in the development of interventions to promote shared decision-making. Additionally, study results indicate that preferences for participation in decisions about treatment methods, as assessed by the CPS, can be generalized to other areas of medical decision-making.

El bibliotecario en el Instituto Mexicano del Seguro Social / The librarian at the Instituto Mexicano del Seguro Social

En las unidades de información que integran el Sistema Bibliotecario del Instituto Mexicano del Seguro Social (IMSS), la tarea de orientar y formar a los usuarios sobre el uso de información es un proceso complejo, debido a la especificidad de las necesidades de información de los usuarios. Los sistemas de información que son utilizados en el Instituto exigen al personal bibliotecario contar con competencias informativas específicas para el acceso, evaluación, organización y uso de la información por medio de las tecnologías de la información. Sin embargo, existen grandes retos, como la carencia de la definición del perfil profesional del bibliotecario médico, ya que es indispensable para que el personal logre satisfacer de forma eficiente las demandas y necesidades de los usuarios de acuerdo con sus diversos perfiles.

In the information units that make up the Instituto Mexicano del Seguro Social (IMSS) Library System, the task of guiding and training users on the use of information is a complex process, due to the specificity of the users' information needs. The information systems that are used in the Institute require the personal librarian to have specific information skills for access, evaluation, organization and use of information through information technologies. However, there are important challenges, such as the lack of definition of the professional profile of the medical librarian, because it is essential for the staff to efficiently satisfy the demands and needs of users according to their various profiles.

Los servicios de información ante la pandemia por COVID-19 / Information services facing the COVID-19 pandemic

La pandemia por COVID-19 ocasionó diversas afectaciones en el mundo, entre ellas la saturación de información en los medios de comunicación tradicionales y en los de divulgación científica, debido a la producción acelerada de material informativo. En el Instituto Mexicano del Seguro Social, el personal bibliotecario ha contribuido a la selección cuidadosa de documentos, ya que brinda servicios de información especializada al personal de salud para apoyarlo en actividades académicas, educativas, docentes y de investigación. En el contexto del distanciamiento fìsico, la necesidad de contar con información actualizada y veraz sobre el nuevo coronavirus se convirtió en una prioridad. En este sentido, el personal bibliotecario enfocó sus esfuerzos en llevar a cabo estrategias que permitieran brindar servicios de información especializada vía remota al reforzar los servicios de referencia, como la alerta bibliográfica y la Diseminación Selectiva de Información, a fin de hacer llegar a los usuarios, de forma oportuna, sencilla y ágil, información actualizada, confiable y de calidad sobre la COVID-19. Estos servicios han sido bien recibidos por los usuarios, pero aún es necesario sistematizar el otorgamiento de servicios de información para identificar cuáles documentos son de mayor interés y utilidad.

The COVID-19 pandemic caused various effects in the world, among them the saturation of information in the traditional media, as well as in those of scientific dissemination, due to the accelerated production of informative material. At the Mexican Institute for Social Security (Instituto Mexicano del Seguro Social), librarians have contributed to the careful selection of documents as they are in charge of providing specialized information services to health personnel in order to support them in academic, educational, teaching and research activities. In the context of physical distancing, the need for up-to-date and accurate information on the new coronavirus became a priority. In this sense, librarians have focused their efforts to carry out strategies that would allow to provide specialized information services remotely, reinforcing reference services such as bibliographic alert and Selective Information Dissemination, to reach users in a timely manner, simple and agile, updated, reliable and quality information on COVID-19. These services have been well received by users, but it is still necessary to systematize the provision of information services to identify which documents are of greatest interest and usefulness.

Users' evaluation of Japan's cancer information services: process, outcomes, satisfaction and independence.

BACKGROUND: Cancer information service (CIS) programmes are becoming increasingly important because patients need to obtain appropriate information and take an active role in their treatment decisions. Programme evaluation is required to determine the level of satisfaction and quality of experiences of users. The purpose of this study is (1) to identify users' evaluation of CIS programmes by both satisfaction and outcomes that reflect the quality of experience and impact of using the CIS, (2) to examine the related factors of these evaluation outcomes and (3) to analyse the differences of those relations between patients and families. METHOD: The self-reported questionnaire was answered by 447 patients and 216 families of patients who used Cancer Information Support Centres (CISCs) at 16 designated cancer hospitals from January 2016 to April 2016. We developed 12 evaluation items, including satisfaction, experience and the impact of using CISC. RESULTS: Respondents evaluated the CISC highly, especially in terms of overall satisfaction, followed by the counselling process. Immediate access to CISC was the strongest factor affecting outcomes. Patients who wanted to consult about 'disease or symptoms' or 'had no specific problem' tended to provide high scores for some outcomes, but those who wanted to consult about a 'financial problem' or 'discharge or care at home' provided negative scores. These trends were also observed in families but to a more limited extent. CONCLUSION: Users' evaluation of CISCs was sufficiently high in terms of overall satisfaction, showing reasonable scores in outcome levels. Immediate access was the strongest factor affecting outcomes and topics of consultation more directly affected evaluation by patients than by families. The distribution of the scores of the measures and related factors was reasonable. The 12-item measurement tool employed in this study seems to be useful for quality monitoring of the CIS.

Establishment of in-hospital clinical network for patients with neurofibromatosis type 1 in Nagoya University Hospital.

Neurofibromatosis type 1 (NF1) is a genetic multisystem disorder. Clinicians must be aware of the diverse clinical features of this disorder in order to provide optimal care for it. We have set up an NF1 in-hospital medical care network of specialists regardless of patient age, launching a multidisciplinary approach to the disease for the first time in Japan. From January 2014 to December 2020, 246 patients were enrolled in the NF1 patient list and medical records. Mean age was 26.0 years ranging from 3 months to 80 years. The number of patients was higher as age at first visit was lower. There were 107 males (41%) and 139 females. After 2011, the number of patients has increased since the year when the medical care network was started. Regarding orthopedic signs, scoliosis was present in 60 cases (26%), and bone abnormalities in the upper arm, forearm, and tibia in 8 cases (3.5%). Neurofibromas other than cutaneous neurofibromas were present in 90 cases (39%), and MPNST in 17 cases (7.4%). We launched a multidisciplinary NF1 clinic system for the first time in Japan. For patients with NF1, which is a hereditary and systemic disease associated with a high incidence of malignant tumors, it will be of great benefit when the number of such clinics in Japan and the rest of Asia is increased.

Urgent-start dialysis in patients referred early to a nephrologist-the CKD-REIN prospective cohort study.

BACKGROUND: The lack of a well-designed prospective study of the determinants of urgent dialysis start led us to investigate its individual- and provider-related factors in patients seeing nephrologists. METHODS: The Chronic Kidney Disease Renal Epidemiology and Information Network (CKD-REIN) is a prospective cohort study that included 3033 patients with CKD [mean age 67 years, 65% men, mean estimated glomerular filtration rate (eGFR) 32 mL/min/1.73 m2] from 40 nationally representative nephrology clinics from 2013 to 2016 who were followed annually through 2020. Urgent-start dialysis was defined as that 'initiated imminently or <48 hours after presentation to correct life-threatening manifestations' according to the Kidney Disease: Improving Global Outcomes 2018 definition. RESULTS: Over a 4-year (interquartile range 3.0-4.8) median follow-up, 541 patients initiated dialysis with a known start status and 86 (16%) were identified with urgent starts. The 5-year risks for the competing events of urgent and non-urgent dialysis start, pre-emptive transplantation and death were 4, 17, 3 and 15%, respectively. Fluid overload, electrolytic disorders, acute kidney injury and post-surgery kidney function worsening were the reasons most frequently reported for urgent-start dialysis. Adjusted odds ratios for urgent start were significantly higher in patients living alone {2.14 [95% confidence interval (CI) 1.08-4.25] or with low health literacy [2.22 (95% CI 1.28-3.84)], heart failure [2.60 (95% CI 1.47-4.57)] or hyperpolypharmacy [taking >10 drugs; 2.14 (95% CI 1.17-3.90)], but not with age or lower eGFR at initiation. They were lower in patients with planned dialysis modality [0.46 (95% CI 0.19-1.10)] and more nephrologist visits in the 12 months before dialysis [0.81 (95% CI 0.70-0.94)] for each visit. CONCLUSIONS: This study highlights several patient- and provider-level factors that are important to address to reduce the burden of urgent-start dialysis.