'Doctor, what would you do in my position?' Health professionals and the decision-making process in pregnancy monitoring.

OBJECTIVE: Routine prenatal screening for Down syndrome challenges professional non-directiveness and patient autonomy in daily clinical practices. This paper aims to describe how professionals negotiate their role when a pregnant woman asks them to become involved in the decision-making process implied by screening. METHODS: Forty-one semi-structured interviews were conducted with gynaecologists-obstetricians (n=26) and midwives (n=15) in a large Swiss city. RESULTS: Three professional profiles were constructed along a continuum that defines the relative distance or proximity towards patients' demands for professional involvement in the decision-making process. The first profile insists on enforcing patient responsibility, wherein the healthcare provider avoids any form of professional participation. A second profile defends the idea of a shared decision making between patients and professionals. The third highlights the intervening factors that justify professionals' involvement in decisions. CONCLUSIONS: These results illustrate various applications of the principle of autonomy and highlight the complexity of the doctor-patient relationship amidst medical decisions today.

Swiss Democracy on the Web 2010 : Society and Politics in a Connected Age

The rapid adoption of online media like Facebook, Twitter or Wikileaks leaves us with little time to think. Where is information technology taking us, our society and our democratic institutions ? Is the Web replicating social divides that already exist offline or does collaborative technology pave the way for a more equal society ? How do we find the right balance between openness and privacy ? Can social media improve civic participation or do they breed superficial exchange and the promotion of false information ? These and lots of other questions arise when one starts to look at the Internet, society and politics. The first part of this paper gives an overview of the social changes that occur with the rise of the Web. The second part serves as an overview on how the Web is being used for political participation in Switzerland and abroad. Le développement rapide de nouveaux médias comme Facebook, Twitter ou Wikileaks ne laisse que peu de temps à la réflexion. Quels sont les changements que ces technologies de l'information impliquent pour nous, notre société et nos institutions démocratiques ? Internet ne fait-il que reproduire des divisions sociales qui lui préexistent ou constitue-t-il un moyen de lisser et d'égaliser ces mêmes divisions ? Comment trouver le bon équilibre entre transparence et respect de la vie privée ? Les médias sociaux permettent-ils de stimuler la participation politique ou ne sont-ils que le vecteur d'échanges superficiels et de fausses informations ? Ces questions, parmi d'autres, émergent rapidement lorsque l'on s'intéresse à la question des liens entre Internet, la société et la politique. La première partie de ce cahier est consacrée aux changements sociaux générés par l'émergence et le développement d'Internet. La seconde fait l'état des lieux de la manière dont Internet est utilisé pour stimuler la participation politique en Suisse et à l'étranger.

Medical and legal professionals' attitudes towards confidentiality and disclosure of clinical information in forensic settings: a survey using case vignettes.

OBJECTIVE: When potentially dangerous patients reveal criminal fantasies to their therapists, the latter must decide whether this information has to be transmitted to a third person in order to protect potential victims. We were interested in how medical and legal professionals handle such situations in the context of prison medicine and forensic evaluations. We aimed to explore the motives behind their actions and to compare these professional groups. METHOD: A mail survey was conducted among medical and legal professionals using five fictitious case vignettes. For each vignette, participants were asked to answer questions exploring what the professional should do in the situation and to explain their justification for the chosen response. RESULTS: A total of 147 questionnaires were analysed. Agreement between participants varied from one scenario to another. Overall, legal professionals tended to disclose information to a third party more easily than medical professionals, the latter tending to privilege confidentiality and patient autonomy over security. Perception of potential danger in a given situation was not consistently associated with actions. CONCLUSION: Professionals' opinions and attitudes regarding the confidentiality of potentially dangerous patients differ widely and appear to be subjectively determined. Shared discussions about clinical situations could enhance knowledge and competencies and reduce differences between professional groups.

Frame detection over the semantic web

In the past, research in ontology learning from text has mainly focused on entity recognition, taxonomy induction and relation extraction. In this work we approach a challenging research issue: detecting semantic frames from texts and using them to encode web ontologies. We exploit a new generation Natural Language Processing technology for frame detection, and we enrich the frames acquired so far with argument restrictions provided by a super-sense tagger and domain specializations. The results are encoded according to a Linguistic MetaModel, which allows a complete translation of lexical resources and data acquired from text, enabling custom transformations of the enriched frames into modular ontology components.

FRAX® International Task Force of the 2010 Joint International Society for Clinical Densitometry & International Osteoporosis Foundation Position Development Conference.

Osteoporosis is a serious worldwide epidemic. FRAX® is a web-based tool developed by the Sheffield WHO Collaborating Center team, that integrates clinical risk factors and femoral neck BMD and calculates the 10 year fracture probability in order to help health care professionals identify patients who need treatment. However, only 31 countries have a FRAX® calculator. In the absence of a FRAX® model for a particular country, it has been suggested to use a surrogate country for which the epidemiology of osteoporosis most closely approximates the index country. More specific recommendations for clinicians in these countries are not available. In North America, concerns have also been raised regarding the assumptions used to construct the US ethnic specific FRAX® calculators with respect to the correction factors applied to derive fracture probabilities in Blacks, Asians and Hispanics in comparison to Whites. In addition, questions were raised about calculating fracture risk in other ethnic groups e.g., Native Americans and First Canadians. The International Society for Clinical Densitometry (ISCD) in conjunction with the International Osteoporosis Foundation (IOF) assembled an international panel of experts that ultimately developed joint Official Positions of the ISCD and IOF advising clinicians regarding FRAX® usage. As part of the process, the charge of the FRAX® International Task Force was to review and synthesize data regarding geographic and race/ethnic variability in hip fractures, non-hip osteoporotic fractures, and make recommendations about the use of FRAX® in ethnic groups and countries without a FRAX® calculator. This synthesis was presented to the expert panel and constitutes the data on which the subsequent Official Positions are predicated. A summary of the International Task Force composition and charge is presented here.

The AO comprehensive classification of pediatric long-bone fractures: a web-based multicenter agreement study.

The first AO comprehensive pediatric long-bone fracture classification system has been proposed following a structured path of development and validation with experienced pediatric surgeons. A Web-based multicenter agreement study involving 70 surgeons in 15 clinics and 5 countries was conducted to assess the reliability and accuracy of this classification when used by a wide range of surgeons with various levels of experience. Training was provided at each clinic before the session. Using the Internet, participants could log in at any time and classify 275 supracondylar, radius, and tibia fractures at their own pace. The fracture diagnosis was made following the hierarchy of the classification system using both clinical terminology and codes. kappa coefficients for the single-surgeon diagnosis of epiphyseal, metaphyseal, or diaphyseal fracture type were 0.66, 0.80, and 0.91, respectively. Median accuracy estimates for each bone and type were all greater than 80%. Depending on their experience and specialization, surgeons greatly varied in their ability to classify fractures. Pediatric training and at least 2 years of experience were associated with significant improvement in reliability and accuracy. Kappa coefficients for diagnosis of specific child patterns were 0.51, 0.63, and 0.48 for epiphyseal, metaphyseal, and diaphyseal fractures, respectively. Identified reasons for coding discrepancies were related to different understandings of terminology and definitions, as well as poor quality radiographic images. Results supported some minor adjustments in the coding of fracture type and child patterns. This classification system received wide acceptance and support among the surgeons involved. As long as appropriate training could be performed, the system classification was reliable, especially among surgeons with a minimum of 2 years of clinical experience. We encourage broad-based consultation between surgeons' international societies and the use of this classification system in the context of clinical practice as well as prospectively for clinical studies.

Convergences and divergences of diabetic patients' and healthcare professionals' opinions of care : a qualitative study

OBJECTIVES: To investigate opinions' convergences and divergences of diabetic patients and health-care professionals on diabetes care and the development of a regional diabetes programme. BACKGROUND: Development and implementation of a regional diabetes programme. RESEARCH DESIGN: Qualitative study using focus groups to elicit diabetic patients' and health-care professionals' opinions, followed by content analysis. SETTING AND PARTICIPANTS: Eight focus groups: four focus groups with diabetic patients (n = 39) and four focus groups with various health-care professionals (n = 34) residing or practicing in the canton of Vaud, Switzerland, respectively. RESULTS: Perceived quality of diabetes care varied between individuals and types of participants. To improve quality, patients favoured a comprehensive follow-up while professionals suggested considering existing structures and trained professionals. All participants mentioned communication difficulties between professionals and were favouring teamwork. In addition, they described the role that patients should have in care and self-management. Financial difficulties were also mentioned by both groups of participants. Finally, they were in favour of the development of a regional diabetes programme adapted to actors' needs. For patients indeed, such a programme would represent an opportunity to improve information and to have access to comprehensive care. For professionals, it would help the development of local networks and the reinforcement of existing tools and structures. DISCUSSION AND CONCLUSIONS: Acknowledging convergences and divergences of opinions of both diabetic patients and health-care professionals should help the further development of a programme adapted to users' needs, taking all stakeholders interests and priorities into consideration.

Official Positions for FRAX® clinical regarding international differences from Joint Official Positions Development Conference of the International Society for Clinical Densitometry and International Osteoporosis Foundation on FRAX®.

Osteoporosis is a serious worldwide epidemic. Increased risk of fractures is the hallmark of the disease and is associated with increased morbidity, mortality and economic burden. FRAX® is a web-based tool developed by the Sheffield WHO Collaborating Center team, that integrates clinical risk factors, femoral neck BMD, country specific mortality and fracture data and calculates the 10 year fracture probability in order to help health care professionals identify patients who need treatment. However, only 31 countries have a FRAX® calculator at the time paper was accepted for publication. In the absence of a FRAX® model for a particular country, it has been suggested to use a surrogate country for which the epidemiology of osteoporosis most closely approximates the index country. More specific recommendations for clinicians in these countries are not available. In North America, concerns have also been raised regarding the assumptions used to construct the US ethnic specific FRAX® calculators with respect to the correction factors applied to derive fracture probabilities in Blacks, Asians and Hispanics in comparison to Whites. In addition, questions were raised about calculating fracture risk in other ethnic groups e.g., Native Americans and First Canadians. In order to provide additional guidance to clinicians, a FRAX® International Task Force was formed to address specific questions raised by physicians in countries without FRAX® calculators and seeking to integrate FRAX® into their clinical practice. The main questions that the task force tried to answer were the following: The Task Force members conducted appropriate literature reviews and developed preliminary statements that were discussed and graded by a panel of experts at the ISCD-IOF joint conference. The statements approved by the panel of experts are discussed in the current paper.

Indicators used by clinicians to assess pain in the brain injured

INTRODUCTION. The assessment of pain in critically ill brain-injured patients is challenging for health professionals. In addition to be unable to self-report, the confused and stereotyped behaviors of these patients are likely to alter their ''normal'' pain responses. Therefore, the pain indicators observed in the general critically ill population may not be appropriate. OBJECTIVES. To identify behavioral and physiological indicators used by clinicians to assess pain in critically ill brain-injured patients who are unable to self-report. METHODS.Amixed-method design was used with the first step being the combination of the results of an integrative literature review with the results of nominal groups of 12 nurses and four physicians. The second step involved a web-based survey to establish content validity. Fourteen experts (clinicians and academics) from three French speaking European countries rated the relevance of each indicator. A content validity index (CVI) was computed for each indicator (I-CVI) and for each category (S-CVI). RESULTS. The first step generated 52 indicators. These indicators were classified into six categories: facial expressions, position/movement, muscle tension, vocalization, compliance with ventilator, and physiological indicators. In the second step, the agreement between raters was high with an Intraclass Correlation Coefficient of 0.88 (95% CI 0.83-0.92). The I-CVIs ranged from 0.07 to 1. Indicators with an I-CVI below 0.5 (n = 12) were not retained, resulting in a final list of 30 indicators. The CVI for this final list was 0.75 with categories ranging from 0.67 (compliance with ventilation) to 0.87 (vocalization). CONCLUSIONS. This process identified specific pain indicators for critically ill braininjured patients. Further evaluation is in progress to test the validity and relevance of these indicators in the clinical setting.

The International LAM Registry: a component of an innovative web-based clinician, researcher, and patient-driven rare disease research platform.

BACKGROUND: A relative inability to capture a sufficiently large patient population in any one geographic location has traditionally limited research into rare diseases. METHODS AND RESULTS: Clinicians interested in the rare disease lymphangioleiomyomatosis (LAM) have worked with the LAM Treatment Alliance, the MIT Media Lab, and Clozure Associates to cooperate in the design of a state-of-the-art data coordination platform that can be used for clinical trials and other research focused on the global LAM patient population. This platform is a component of a set of web-based resources, including a patient self-report data portal, aimed at accelerating research in rare diseases in a rigorous fashion. CONCLUSIONS: Collaboration between clinicians, researchers, advocacy groups, and patients can create essential community resource infrastructure to accelerate rare disease research. The International LAM Registry is an example of such an effort. 82.