Evaluación del grado de información de los pacientes al ser incluidos en el programa de cuidados paliativos domiciliarios / Evaluation of the degree of patient information to be included in the home-based palliative care program

El hecho de comunicar a un paciente su diagnóstico cuando éste es desfavorable, se convierte en un asunto sumamente humano. La bioética y la legislación protege de este derecho a la información. El objetivo del estudio es evaluar el grado de información de los pacientes al ser incluidos en el programa de cuidados paliativos domiciliarios. Se ha realizado un estudio cuantitativo, descriptivo, retrospectivo, transversal. Año de estudio 2012 en pacientes diagnosticados de procesos de enfermedad avanzada terminal valorados por el Equipo de Soporte de Atención Paliativa Domiciliaria, de la Dirección Asistencial Norte de la Comunidad de Madrid. La muestra fue de 184 pacientes. Analizando la relación entre el grado de información y la edad categorizada, existiendo diferencias estadísticamente significativas (p<0,01) siendo el grupo de edad en el que hay más pacientes correctamente informados el de ≤65 años con un porcentaje del 95,3%. Estaban más informados los pacientes con un Pfeiffer <4 en el 89,3% de los casos (p< 0,01). Más de la mitad de los pacientes habían recibido información acerca de su enfermedad y en mayor proporción completa. Con más frecuencia fueron varones con edad comprendida entre 76 y 85 años, con patología oncológica, presentando mal estado funcional pero no presentaron deterioro cognitivo. La información de la familia era mayor que la del propio paciente y en mayor grado era completa. Los factores relacionados con un mejor nivel de información fueron la edad ≤65años y la ausencia de deterioro cognitivo. El lugar predominante de fallecimiento en el seguimiento fue el domicilio

The fact of communicating to a patient his or her diagnosis when it is unfavourable, this becomes a really human issue. The bioethics and the legislation protect this right of information. The aim of this study is to evaluate the degree of information of patients when they are included in the home palliative care program. This is a quantitative, descriptive, retrospective and transversal study. The year of the study is 2012 in patients diagnosed with advanced terminal illnesses processes valued by the Team of Home Palliative Attention Support, of the North Welfare Direction of the Community of Madrid. The sample size was 184 patients. Analysing the relationship between the degree of information and the age, existing differences statistically significant (p<0,01) being the group in which there are more patients correctly informed the one were the age is ≤65 years old with a percentage of 95,3%. The patients with a Pfeiffer <4 in the 89,3% of the cases (p<0,01) were more informed. More than half the patients had received some information about their illness and within that half there is higher proportion of people who received complete information. The more frequent were male patients with age between 76 and 85 with oncologic pathology, showing a bad functional condition but didn’t present cognitive deterioration. The information received by the family was more complete that the one the own patient knew. The factors related with a better degree of information were being younger than 65 and a lack of cognitive deterioration. The predominant place of the decease in the monitoring of the patient was the their home

A Framework for Global Collaborative Data Management for Malaria Research.

Data generated during the course of research activities carried out by the International Centers of Excellence for Malaria Research (ICEMR) is heterogeneous, large, and multi-scaled. The complexity of federated and global data operations and the diverse uses planned for the data pose tremendous challenges and opportunities for collaborative research. In this article, we present the foundational principles for data management across the ICEMR Program, the logistics associated with multiple aspects of the data life cycle, and describe a pilot centralized web information system created in PlasmoDB to query a subset of this data. The paradigm proposed as a solution for the data operations in the ICEMR Program is widely applicable to large, multifaceted research projects, and could be reproduced in other contexts that require sophisticated data management.

Social media creates significant risks for nursing.

As nurses' use of social media becomes prevalent, nurse leaders continue to struggle with how best to embrace this communications platform while protecting the confidentiality of patient data. Nursing leadership must move decisively to balance its social media policies and practices against the need for information to move quickly and efficiently across the continuum of care.

What should be the data sharing policy of cognitive science?

There is a growing chorus of voices in the scientific community calling for greater openness in the sharing of raw data that lead to a publication. In this commentary, we discuss the merits of sharing, common concerns that are raised, and practical issues that arise in developing a sharing policy. We suggest that the cognitive science community discuss the topic and establish a data-sharing policy.

Ética profesional: errores e implicaciones en la consulta y utilización de la información cientificotécnica / Professional ethics: mistakes and implications in the outpatient department and use of the scientific and technical information

La actividad que precisa la generación de conocimientos para la producción científica, implica un reto diario para el profesional de la información. En este artículo se realiza un acercamiento a la labor, la responsabilidad y el desempeño de este último ante la magnitud de implicaciones éticas y errores cometidos por los autores en sus escritos (muchos de ellos evitables), particularmente con respecto a la consulta y utilización de documentos publicados sobre la medicina y ramas afines(AU)

The activity which demands of knowledge for the scientific production, implies a daily challenge for the information professional. In this article an approach to the professional's work, responsibility and performance is presented, taking into account the magnitude of ethical implications and mistakes committed by the authors in their writings (many of them avoidable), particularly with regard to the outpatient department and the use of published documents on medicine and related branches(AU)

Responsible research: what is expected? Commentary on: "Statistical power, the Belmont Report, and the ethics of clinical trials".

"Responsible research" and "good science" are concepts with various meanings depending on one's perspective and assumptions. Fellow researchers, research participants, policy makers and the general public also have differing expectations of the benefits of research ranging from accurate and reliable data that extend the body of knowledge, to solutions to societal concerns. Unless these differing constituencies articulate their differing views they may fail to communicate and undermine the value of research to society.

Integration of data for research.

This chapter gives an educational overview of: * The clinical research lifecycle * Sources of research data * The need for contextual data standardization to retain meaning * Information management principles for sustainable data * Data linkage technologies used to support collaborative research aimed at improving health outcomes * Making use of identifiers in health.

Traceability information carriers. The technology backgrounds and consumers' perceptions of the technological solutions.

The implementation of traceability in the food supply chain has reinforced adoption of technologies with the ability to track forward and trace back product-related information. Based on the premise that these technologies can be used as a means to provide product-related information to consumers, this paper explores the perceived benefits and drawbacks of such technologies. The aim is to identify factors that influence consumers' perceptions of such technologies, and furthermore to advise the agri-food business on issues that they should consider prior to the implementation of such technologies in their production lines. For the purposes of the study, a focus group study was conducted across 12 European countries, while a set of four different technologies used as a means to provide traceability information to consumers was the focal point of the discussions in each focus group. Results show that the amount of and confidence in the information provided, perceived levels of convenience, impact on product quality and safety, impact on consumers' health and the environment, and potential consequences on ethical and privacy liberties constitute important factors influencing consumers' perceptions of technologies that provide traceability.

Professionalism in the age of computerised medical records.

Electronic medical records have the potential to improve clinical care and to provide answers to important research questions. Research using existing medical records has provided important knowledge about the effectiveness and risks of widely-used medications. However, electronic medical records also raise ethical dilemmas regarding informed consent and confidentiality. Breaches of confidentiality with electronic records can be more severe than breaches with paper records. Furthermore, computerised health information raises new ethical dilemmas regarding direct advertisements of new drugs to patients, the impact of email on the doctor-patient relationship and the quality of outsourced radiology readings. Resolving these dilemmas may require new regulations and laws. In the interim, society will need to rely on physicians' professionalism to minimise the risks of electronic medical records and to ensure that the benefits outweigh the risks.

Requests for information by family and friends of cancer patients calling the National Cancer Institute's Cancer Information Service.

PURPOSE: To characterize their information needs, we examined the main topics of inquiry and discussion (subjects of interaction, SOI) of calls made by family and friends of cancer patients to the National Cancer Institute's Cancer Information Service's (CIS) 1-800-4-CANCER telephone information service and summarized differences by sociodemographic characteristics. DESIGN AND ANALYSIS: Data from 26 789 family or friends of cancer patients calling the CIS between September 2002 and August 2003 were analyzed. Frequencies, chi(2)'s, and logistic regressions were conducted to ascertain sample characteristics and sociodemographic correlates of each SOI. RESULTS AND CONCLUSIONS: The greatest proportion of calls concerned specific treatment information (54.9%) and general cancer site information (36.9%). Calls about specific treatment information were more likely among Asians, Hawaiian Natives, and Pacific Islanders (OR = 1.23, 1.04-1.45), and those with higher education (OR = 1.21, 1.18-1.25). As age increased, the odds of calls about specific treatment information also increased (OR = 1.05, 1.03-1.07). Females (OR = 0.78, 0.72-0.84), Hispanics (OR = 0.77, 0.67-0.89), African-Americans (OR = 0.68, 0.61-0.76), and American-Indians and Alaskan Natives (OR = 0.74, 0.58-0.93) were less likely to inquire about specific treatment information. Inquiries about general cancer site information were more likely among females (OR = 1.14, 1.06-1.23) and less likely among younger callers (OR = 0.95, 0.93-0.97) and African-Americans (OR = 0.87, 0.78-0.98). Differences in inquiries made by sociodemographic subgroups can inform the CIS' and other cancer-related organizations' efforts to develop and disseminate cancer information for family and friends of cancer patients.

Health informatics: ethical issues.

Ethics is a component of the education of health care mangers and supervisors. Recent advances in the technologies of health informatics present these leader with new ethical challenges. Holding the promise of beneficence, these technologies are purported to increase access, improve quality, and decrease the costs of care. Aspects of these technologies, however, create conflicts with the ethical principles of autonomy, fidelity, and justice. Infoethics is suggested as a means to examine these conflicts. A multipronged solution that incorporates adherence to regulations and standards, promotion of codes of conduct and ethics, and creation of a culture of infoethics is recommended.