Post-trial access to study medication: a Brazilian e-survey with major stakeholders in clinical research

Objectives To analyse the perspective of clinical research stakeholders concerning post-trial access to study medication. Methods Questionnaires and informed consents were sent through e-mail to 599 ethics committee (EC) members, 290 clinical investigators (HIV/AIDS and Diabetes) and 53 sponsors in Brazil. Investigators were also asked to submit the questionnaire to their research patients. Two reminders were sent to participants. Results The response rate was 21%, 20% and 45% in EC, investigators and sponsors' groups, respectively. 54 patients answered the questionnaire through their doctors. The least informative item in the consent form was how to obtain the study medication after trial. If a benefit were demonstrated in the study, 60% of research participants and 35% of EC answered that all patients should continue receiving study medication after trial; 43% of investigators believed the medication should be given to participants, and 40% to subjects who participated and benefited from treatment. For 50% of the sponsors, study medication should be assured to participants who had benefited from treatment. The majority of responders answered that medication should be provided free by sponsors; investigators and sponsors believed the medication should be kept until available in the public health sector; EC members said that the patient should keep the benefit; patients answered that benefits should be assured for life. Conclusions Due to the study limitations, the results cannot be generalised; however, the data can contribute to discussion of this complex topic through analysing the views of stakeholders in clinical research in Brazil.

Access to healthcare services for tuberculosis: analysis of patient satisfaction

Tuberculosis remains a pubic health challenge. Uncountable efforts are made to control the disease, and patient treatment and accessibility to healthcare can hinder reaching a cure. The objective of this article is to analyze the satisfaction of tuberculosis patients regarding tuberculosis control services. This is an epidemiological, prospective study, using both a quantitative and qualitative approach. Data were collected using a semi-structured questionnaire. Participants included 77 patients. The quantitative data were positively evaluated, and the qualitative data permitted an understanding of the patients' experience regarding their accessibility and treatment. Aspects such as the criteria for performing Directly Observed Treatment and the proximity of the healthcare facility to the patients' residence affected their satisfaction, which implies the need to reorganize healthcare services in order to provide more appropriate care to tuberculosis patients.

Oral health and access to dental care services in relation to the Health Necessities Index. Sao Paulo, Brazil, 2008

The Health Department of Sao Paulo, Brazil, has developed a Health Necessities Index (HNI) to identify priority areas for providing health assistance. In 2008, a survey of the status of oral health was conducted. The objective of this ecological study was to analyze the status of oral health in relation to the HNI. The variables, stratified by the age of 5, 12 and 15 years old were: percentage of individuals with difficulty of access to dental care services; DMFT and DMFS; prevalence of the need for tooth extraction and treatment of dental caries. Data were analyzed for the 25 Health Technical Supervision Units (HTS). The Statistical Covariance Test was used as well as the Pearson correlation coefficient and linear regression model. A positive correlation was observed between high scores of the HNI and difficulty of access to services. In the HTS with high scores of HNI a higher incidence of dental caries was observed, a greater need for tooth extractions and low caries-free incidence. In order to improve health conditions of the population it is mandatory to prioritize actions in areas of social deprivation.

Digital library of historical cartography: open access to cultural heritage and public good

This paper describes the integration of information between Digital Library of Historical Cartography and Bibliographical Database (DEDALUS), both of the University of São Paulo (USP), to guarantee open, public access by Internet to the maps in the collection and make them available to users everywhere. This digital library was designed by Historical Cartography Studies Laboratory team (LECH/USP), and provides maps images on the Web, of high resolution, as well as such information on these maps as technical-scientific data (projection, scale, coordinates), printing techniques and material support that have made their circulation and cultural consumption possible. The Digital Library of Historical Cartography is accessible not only to the historical cartography researchers, but also to students and the general public. Beyond being a source of information about maps, the Digital Library of Historical Cartography seeks to be interactive, exchanging information and seeking dialogue with different branches of knowledge

Exercise associated factors affecting cardiovascular health and function: from myocyte signaling to genetic variations

The exact mechanisms of the exercise induced adaptations is not lucid, but recent studies have delineated two means of signaling by which the adaptations occur (1) substrate availability signaling (metabolic stress) (2) hormone-receptor signaling. We have decided to specifically investigate two metabolic signaling enzymes [AMP-activated kinase (AMPK) and Sirtuin 1(SIRT1)] and two hormones [Adiponectin and Adrenergic stimulation].Tis based on four papers with the following conclusions: (1)Increase in SIRT1 activity and expression in H9c2 cells treated with phenylephrine is an adaptive response to the hypertrophic stress, mediated by AMPK. (2)The lack of optimal nutritional conditions (energetic substrates) due to a prolonged activation of AMPK can contrast the establishment of hypertrophy, possibly also by means of the negative modulation of ODC activity. (3) Our findings offer a possibile hypothesis as to the fact the the G allele on site 45 could lead to the increasd risk of Type II diabetes through a decrease in lean body mass. (4) Our results suggest that there is an ADIPOQ gene effect in relation to bone parameters. Statistical analysis show that the presence of the T allele in position 45 favors an increase in lumbar spine bone mineral content (BMC) when compared to subjects with a G allele substitution, which can be do the the increase in lean body mass in this genotype group.

Conflict affected peoples’ access to education: IDP pupils in Georgia

This work seeks to understand what kind of impact educational policies have had on the secondary school students among internally displaced persons (IDPs) and their identity reconstruction in Georgia. The study offers a snapshot of the current situation based on desk study and interviews conducted among a sample of secondary school IDP pupils. In the final chapter, the findings will be reflected against the broader political context in Georgia and beyond. The study is interdisciplinary and its methodology is based on social identity theory. I shall compare two groups of IDPs who were displaced as a result of two separate conflicts. The IDPs displaced as a result of conflict in Abkhazia in 1992–1994 are named as old caseload IDPs. The second group of IDPs were displaced after a conflict in South Ossetia in 2008. Additionally, I shall touch upon the situation of the pupils among the returnees, a group of Georgian old caseload IDPs, who have spontaneously returned to de facto Abkhazia. According to the interviews, the secondary school student IDPs identify themselves strongly with the Georgian state, but their group identities are less prevailing. Particularly the old case load IDP students are fully integrated in local communities. Moreover, there seems not to be any tangible bond between the old and new caseload IDP students. The schools have neither tried nor managed to preserve IDP identities which would, for instance, make political mobilisation likely along these lines. Right to education is a human right enshrined in a number of international conventions to which the IDPs are also entitled. Access to education or its denial has a deep impact on individual and societal development. Furthermore, education has a major role in (re)constructing personal as well as national identity.

Elastic computing on Cloud resources for the CMS experiment

Nowadays, data handling and data analysis in High Energy Physics requires a vast amount of computational power and storage. In particular, the world-wide LHC Com- puting Grid (LCG), an infrastructure and pool of services developed and deployed by a ample community of physicists and computer scientists, has demonstrated to be a game changer in the efficiency of data analyses during Run-I at the LHC, playing a crucial role in the Higgs boson discovery. Recently, the Cloud computing paradigm is emerging and reaching a considerable adoption level by many different scientific organizations and not only. Cloud allows to access and utilize not-owned large computing resources shared among many scientific communities. Considering the challenging requirements of LHC physics in Run-II and beyond, the LHC computing community is interested in exploring Clouds and see whether they can provide a complementary approach - or even a valid alternative - to the existing technological solutions based on Grid. In the LHC community, several experiments have been adopting Cloud approaches, and in particular the experience of the CMS experiment is of relevance to this thesis. The LHC Run-II has just started, and Cloud-based solutions are already in production for CMS. However, other approaches of Cloud usage are being thought of and are at the prototype level, as the work done in this thesis. This effort is of paramount importance to be able to equip CMS with the capability to elastically and flexibly access and utilize the computing resources needed to face the challenges of Run-III and Run-IV. The main purpose of this thesis is to present forefront Cloud approaches that allow the CMS experiment to extend to on-demand resources dynamically allocated as needed. Moreover, a direct access to Cloud resources is presented as suitable use case to face up with the CMS experiment needs. Chapter 1 presents an overview of High Energy Physics at the LHC and of the CMS experience in Run-I, as well as preparation for Run-II. Chapter 2 describes the current CMS Computing Model, and Chapter 3 provides Cloud approaches pursued and used within the CMS Collaboration. Chapter 4 and Chapter 5 discuss the original and forefront work done in this thesis to develop and test working prototypes of elastic extensions of CMS computing resources on Clouds, and HEP Computing “as a Service”. The impact of such work on a benchmark CMS physics use-cases is also demonstrated.

Access to specialized pediatric cancer care in Switzerland

Specialized pediatric cancer centers (PCCs) are thought to be essential to obtain state-of-the-art care for children and adolescents. We determined the proportion of childhood cancer patients not treated in a PCC, and described their characteristics and place of treatment.

Examining the Role of Vocational Rehabilitation on Access to Care and Public Health Outcomes for People Living with HIV/AIDS

The purpose of this study is to examine the role of vocational rehabilitation services in contributing to the goals of the National HIV/AIDS strategy. Three key research questions are addressed: (a) What is the relationship among factors associated with the use of vocational rehabilitation services for people living with HIV/AIDS? (b) Are the factors associated with use of vocational rehabilitation also associated with access to health care, supplemental employment services and reduced risk of HIV transmission? And (c) What unique role does use of vocational rehabilitation services play in access to health care and HIV prevention? Survey research methods were used to collect data from a broad sample of volunteer respondents who represented diverse racial (37% Black, 37% White, 18% Latino, 7% other), gender (65% male, 34% female, 1% transgender) and sexual orientation (48% heterosexual, 44% gay, 8% bisexual) backgrounds. The fit of the final structural equation model was good (root mean square error of approximation = .055, Comparative Fit Index=.953, Tucker Lewis Index=.945). Standardized effects with bootstrap confidence intervals are reported. Overall, the findings support the hypothesis that vocational rehabilitation services can play an important role in health and prevention strategies outlined in the National HIV/AIDS strategy.

The causal effect of switching to second-line ART in programmes without access to routine viral load monitoring

We examined the effect of switching to second-line antiretroviral therapy (ART) on mortality in patients who experienced immunological failure in ART programmes without access to routine viral load monitoring in sub-Saharan Africa.

Agricultural Policymaking: Interest Groups and Access to Governmental Officials

Conservation agriculture that focuses on soil recovery is both economically and environmentally sustainable. This lies in contrast with many of the current agricultural practices, which push for high production, which, in turn lead to over-depletion of the soil. Agricultural interest groups play a role in crafting farming policies with governmental officials. Therefore, my study examined three interest group types agribusinesses, farmer organizations, and environmental NGOs that seek to influence agricultural policy, specifically focusing on the federal farm bill, due to its large impact throughout the nation. The research in which data wasgathered through subject interviews, a literature review, and databases found that access to governmental officials affects the amount of influence a group can have. Access is contingent upon: 1) the number of networks (social, professional, and political), 2) amount of money spent through campaign contributions and lobbying expenditures, and 3) extent of business enterprises and subsidiaries. The evidence shows that there is a correlation between these variables and the extent of access. My research concludes that agribusiness interest groups have the most access to government officials, and thus have the greatest influence on agricultural policies. Because agribusinesses support subsidies of commodity-crops this indirectly impacts conservation agriculture, as the two programs compete in a zero-sum game for funding in the farm bills.