Concept: File sharing
BACKGROUND: The clinical course of Cystic Fibrosis (CF) is usually measured using the percent predicted FEV1 and BMI Z-score referenced against a healthy population, since achieving normality is the ultimate goal of CF care. Referencing against age and sex matched CF peers may provide valuable information for patients and for comparison between CF centers or populations. Here, we used a large database of European CF patients to compute CF specific reference equations for FEV1 and BMI, derived CF-specific percentile charts and compared these European data to their nearest international equivalents. METHODS: 34859 FEV1 and 40947 BMI observations were used to compute European CF specific percentiles. Quantile regression was applied to raw measurements as a function of sex, age and height. Results were compared with the North American equivalent for FEV1 and with the WHO 2007 normative values for BMI. RESULTS: FEV1 and BMI percentiles illustrated the large variability between CF patients receiving the best current care. The European CF specific percentiles for FEV1 were significantly different from those in the USA from an earlier era, with higher lung function in Europe. The CF specific percentiles for BMI declined relative to the WHO standard in older children. Lung function and BMI were similar in the two largest contributing European Countries (France and Germany). CONCLUSION: The CF specific percentile approach applied to FEV1 and BMI allows referencing patients with respect to their peers. These data allow peer to peer and population comparisons in CF patients.
In 2014, the vast majority of published biomedical research is still hidden behind paywalls rather than open access. For more than a decade, similar restrictions over other digitally available content have engendered illegal activity. Music file sharing became rampant in the late 1990s as communities formed around new ways to share. The frequency and scale of cyber-attacks against commercial and government interests has increased dramatically. Massive troves of classified government documents have become public through the actions of a few. Yet we have not seen significant growth in the illegal sharing of peer-reviewed academic articles. Should we truly expect that biomedical publishing is somehow at less risk than other content-generating industries? What of the larger threat-a “Biblioleaks” event-a database breach and public leak of the substantial archives of biomedical literature? As the expectation that all research should be available to everyone becomes the norm for a younger generation of researchers and the broader community, the motivations for such a leak are likely to grow. We explore the feasibility and consequences of a Biblioleaks event for researchers, journals, publishers, and the broader communities of doctors and the patients they serve.
Risk, Benefit, and Moderators of the Affect Heuristic in a Widespread Unlawful Activity: Evidence from a Survey of Unlawful File-Sharing Behavior
- Risk analysis : an official publication of the Society for Risk Analysis
- Published over 1 year ago
Increasing the perception of legal risk via publicized litigation and lobbying for copyright law enforcement has had limited success in reducing unlawful content sharing by the public. We consider the extent to which engaging in file sharing online is motivated by the perceived benefits of this activity as opposed to perceived legal risks. Moreover, we explore moderators of the relationship between perceived risk and perceived benefits; namely, trust in industry and legal regulators, and perceived online anonymity. We examine these questions via a large two-part survey of consumers of music (n = 658) and eBooks (n = 737). We find that perceptions of benefit, but not of legal risk, predict stated file-sharing behavior. An affect heuristic is employed: as perceived benefit increases, perceived risk falls. This relationship is increased under high regulator and industry trust (which actually increases perceived risk in this study) and low anonymity (which also increases perceived risk). We propose that, given the limited impact of perceived legal risk upon unlawful downloading, it would be better for the media industries to target enhancing the perceived benefit and availability of lawful alternatives.
HIV treatment models in Africa are labour intensive and require a high number of skilled staff. In this context, task-shifting is considered a feasible alternative for ART service delivery. In 2006, a lay health cadre of expert patients (EPs) at a tertiary referral HIV clinic in Zomba, Malawi was capacitated. There are few evaluations of EP program efficacy in this setting. Triage is the process of prioritizing patients in terms of the severity of their condition and ensures that no harmful delays occur to treatment and care. This study evaluates the safety of task-shifting triage, in an ambulatory low resource setting, to EPs.
Polycystic Ovary Syndrome is a common, chronic condition which affects women living with the condition both physically and psychologically. Social support may be beneficial to sufferers in coping with chronic conditions and the Internet is becoming a common place for accessing social support and information. The aim of this study was to consider the experiences of women living with Polycystic Ovary Syndrome who access and participate in an online support group discussion forum dedicated to issues surrounding this condition.
- Journal of obstetric, gynecologic, and neonatal nursing : JOGNN / NAACOG
- Published over 4 years ago
OBJECTIVE: To explore the intersection of peer-to-peer milk sharing and donor milk banks. METHODS: A descriptive survey design containing closed and open-ended questions was used to examine women’s perceptions of peer-to-peer milk sharing and milk banking. Closed-ended questions were analyzed using descriptive statistics and conventional qualitative content analysis was used to analyze open-ended responses. SETTING: Participants were recruited via the Facebook sites of two online milk-sharing networks (Human Milk 4 Human Babies and Eats on Feet). PARTICIPANTS: Ninety-eight milk donors and 41 milk recipients who had donated or received breast milk in an arrangement that was facilitated via the Internet. RESULTS: One half of donor recipients could not donate to a milk bank because there were no banks local to them or they did not qualify as donors. Other respondents did not donate to a milk bank because they viewed the process as difficult, had philosophical objections to milk banking, or had a philosophical attraction to peer sharing. Most donor respondents felt it was important to know the circumstances of their milk recipients. No recipient respondents had obtained milk from a milk bank; it was recognized that they would not qualify for banked milk or that banked milk was cost prohibitive. CONCLUSION: Peer-to-peer milk donors and recipients may differ from milk bank donors and recipients in significant ways. Cooperation between milk banks and peer sharing networks could benefit both groups.
The first Rhinology Future Debates was held in Brussels in December 2016, organized by EUFOREA (European Forum for Research and Education in Allergy and Airways diseases). The purpose of these debates is to bring novel developments in the field of Rhinology to the attention of the medical, paramedical and patient community, in a highly credible and balanced context. For the first time in Rhinology, a peer to peer scientific exchange with key experts in the field of rhinology and key medical colleagues from leading industries let to a brainstorming and discussion event on a number of hot issues in Rhinology. Novel developments are presented by key experts from industry and/or key thought leaders in Rhinology, and then followed by a lively debate on the potential positioning of new developments in care pathways, the strengths and weaknesses of the novel development(s), and comparisons with existing and/or competing products, devices, and/or molecules. As all debates are recorded and distributed on-line with limited editing (www.rhinology-future.com), EUFOREA aims at maximizing the education of the target groups on novel developments, allowing a critical appraisal of the future and a more rapid implementation of promising novel tools, techniques and/or molecules in clinical practise in Europe. The next Rhinology Future debate will be held in Brussels in December 2017.
- Journal of the American College of Radiology : JACR
- Published about 2 months ago
To describe the process by which a radiology department moved from peer review to peer collaborative improvement (PCI) and review data from the first 16 months of the PCI process.