Une politique concernant les données issues d’un programme de recherches interventionnelles en santé mondiale

ArticleLa recherche interventionnelle en santé mondiale est souvent effectuée au moyen de partenariats scientifiques internationaux. Mais la réalisation de telles recherches, notamment dans les pays à faible revenu où les enjeux de pouvoir, d’argent et de relations interculturelles sont exacerbés, soulève de nombreux défis éthiques, notamment concernant la conduite responsable lors des recherches collaboratives. L’un d’eux est la conservation, l’accès, l’utilisation et la publication des données. Malgré l’existence de multiples politiques et documents phares sur l’éthique et la conduite responsable de la recherche, les chercheurs en recherche interventionnelle sont encore peu outillés pour faire face à ce défi. Dans le contexte d’un programme de recherches interventionnelles réalisées au Burkina Faso, les auteurs souhaitent partager leur expérience dans le développement d’une politique interne concernant leurs données. Après avoir évoqué le contexte global et particulier, l’article présente le processus de formulation et d’adoption de cette politique par les chercheurs d’une équipe interdisciplinaire et internationale (Allemagne, Burkina Faso, Canada, France). Les valeurs qui enchâssent cette politique interne sont la transparence, la prévention, le consensus autour du processus de production, le respect des principes internationaux, l’accès libre aux connaissances produites et la préoccupation pour leur diffusion et utilisation. La politique se présente en plusieurs parties : objet, types et statuts des chercheurs impliqués, conservation des données, accès et utilisation des données, production scientifique et paternité. Les principaux défis rencontrés par les chercheurs pour formuler cette politique sont analysés dans un souci de partage pour susciter un débat rarement abordé. La confiance, la transparence et le respect mutuel doivent être au cœur de tout partenariat scientifique en recherche interventionnelle.Interventional global health research is often carried out through international scientific partnerships. However, the conduct of such research, especially in low-income countries where issues of power, money and intercultural relations are exacerbated, raises many ethical challenges particularly related to responsible conduct in collaborative research. One of these challenges is the storage, access, use and publication of data. Despite the existence of multiple influential policies and documents on ethics and the responsible conduct of research, researchers in intervention research are still not equipped to deal with such challenges. In the context of an intervention research program conducted in Burkina Faso, the authors would like to share their experience in the development of an internal policy concerning their data. After presenting the global and the particular context, the paper presents the process of policy formulation and its adoption by the researchers of an interdisciplinary and international team (Burkina Faso, Canada, France, Germany). The values that entrench this internal policy are: transparency, prevention, consensus about the production process, respect for international principles, free access to the knowledge produced and concerns regarding its dissemination and use. The policy is presented in several parts: aim, types and status of the participating researchers, data storage, access and use of data, scientific production and authorship. The main challenges faced by researchers in formulating this policy are analyzed in a shared desire to spark a debate that is rarely addressed. Trust, transparency and mutual respect should be central to any scientific partnership in intervention research

Les Barrières à la Pratique des Sages-Femmes au Canada

Barriers to the current practice of midwives in Canada relate to the perception of clients and care providers, the lack of financial and physical resources, the reluctance on the part of other medical specialists and a lack of recognition of midwives professional activity and their skills. Although deliveries without serious complications are the vast majority of births, lowrisk pregnancies are often supported by physicians, rather than by midwives. In Quebec, long waiting lists prevent women from resorting to a midwife because, often, this service is simply not present, despite the satisfaction with care extended by the mothers. Training programs for midwives have limited contingency. At the global level, access to the practice of midwives is restricted due to lack of funding, although the practice of midwives generates less cost than other practitioners’. In addition, obstetricians are not open to the idea of losing less complicated cases, handled by midwives. However, in light of the current budgetary constraints, Governments would benefit from investing in the profession of midwives which clearly demonstrates its effectiveness in the delivery of quality care.Les barrières à la pratique actuelle des sages-femmes au Canada sont reliées à la perception des pourvoyeurs de soins et des clientes, au manque de ressources matérielles et humaines, aux réticences de la part du personnel médical et à un manque de reconnaissance de l’activité des sages-femmes et de leurs compétences. Malgré que la plupart des accouchements se déroulent sans complications graves, les grossesses à faibles risques sont souvent prises en charge par des médecins, plutôt que par des sages-femmes. Au Québec, de longues listes d’attente empêchent les femmes d’avoir recours à une sagefemme car ce service est peu développé, même inexistant par endroit, et ce, malgré la satisfaction des soins reportée par les parturientes. Les programmes de formation de sages-femmes sont contingentés. Au niveau mondial, l’accès à la pratique des sages-femmes est restreint en raison d’un manque de financement, bien que la pratique des sages-femmes génère moins de coût que la pratique des autres praticiens. De plus, les obstétriciens ne sont pas ouverts à l’idée de perdre les cas les moins compliqués, pouvant être confiés aux sages-femmes. En tout et compte tenu des difficultés budgétaires actuelles, les gouvernements auraient avantage à investir dans cette profession qui, de toute évidence, démontre clairement son efficacité et offre des soins de qualité

A protocol for a randomised clinical trial of the effect of providing feedback on inhaler technique and adherence from an electronic device in patients with poorly controlled severe asthma.

INTRODUCTION: In clinical practice, it is difficult to distinguish between patients with refractory asthma from those with poorly controlled asthma, where symptoms persist due to poor adherence, inadequate inhaler technique or comorbid diseases. We designed an audio recording device which, when attached to an inhaler, objectively identifies the time and technique of inhaler use, thereby assessing both aspects of adherence. This study will test the hypothesis that feedback on these two aspects of adherence when passed on to patients improves adherence and helps clinicians distinguish refractory from difficult-to-control asthma. METHODS: This is a single, blind, prospective, randomised, clinical trial performed at 5 research centres. Patients with partially controlled or uncontrolled severe asthma who have also had at least one severe asthma exacerbation in the prior year are eligible to participate. The effect of two types of nurse-delivered education interventions to promote adherence and inhaler technique will be assessed. The active group will receive feedback on their inhaler technique and adherence from the new device over a 3-month period. The control group will also receive training in inhaler technique and strategies to promote adherence, but no feedback from the device. The primary outcome is the difference in actual adherence, a measure that incorporates time and technique of inhaler use between groups at the end of the third month. Secondary outcomes include the number of patients who remain refractory despite good adherence, and differences in the components of adherence after the intervention. Data will be analysed on an intention-to-treat and a per-protocol basis. The sample size is 220 subjects (110 in each group), and loss to follow-up is estimated at 10% which will allow results to show a 10% difference (0.8 power) in adherence between group means with a type I error probability of 0.05. TRIAL REGISTRATION NUMBER: NCT01529697; Pre-results

Support for Relatives Bereaved by Psychiatric Patient Suicide: National Confidential Inquiry Into Suicide and Homicide Findings

OBJECTIVES: International suicide prevention strategies recommend providing support to families bereaved by suicide. The study objectives were to measure the proportion of cases in which psychiatric professionals contact next of kin after a patient’s suicide and to investigate whether specific, potentially stigmatizing patient characteristics influence whether the family is contacted. METHODS: Annual survey data from England and Wales (2003–2012) were used to identify 11,572 suicide cases among psychiatric patients. Multivariate regression analysis was used to describe the association between specific covariates (chosen on the basis of clinical judgment and the published literature) and the probability that psychiatric staff would contact bereaved relatives of the deceased. RESULTS: Relatives were not contacted after the death in 33% of cases. Contrary to the hypothesis, a violent method of suicide was independently associated with greater likelihood of contact with relatives (adjusted odds ratio=1.67). Four patient factors (forensic history, unemployment, and primary diagnosis of alcohol or drug dependence or misuse) were independently associated with less likelihood of contact with relatives. Patients’ race-ethnicity and recent alcohol or drug misuse were not associated with contact with relatives. CONCLUSIONS: Four stigmatizing patient-related factors reduced the likelihood of contacting next of kin after patient suicide, suggesting inequitable access to support after a potentially traumatic bereavement. Given the association of suicide bereavement with suicide attempt, and the possibility of relatives’ shared risk factors for suicide, British psychiatric services should provide more support to relatives after patient suicide

The Fourteenth Data Release of the Sloan Digital Sky Survey: First Spectroscopic Data from the extended Baryon Oscillation Spectroscopic Survey and from the second phase of the Apache Point Observatory Galactic Evolution Experiment

The fourth generation of the Sloan Digital Sky Survey (SDSS-IV) has been in operation since July 2014. This paper describes the second data release from this phase, and the fourteenth from SDSS overall (making this, Data Release Fourteen or DR14). This release makes public data taken by SDSS-IV in its first two years of operation (July 2014-2016). Like all previous SDSS releases, DR14 is cumulative, including the most recent reductions and calibrations of all data taken by SDSS since the first phase began operations in 2000. New in DR14 is the first public release of data from the extended Baryon Oscillation Spectroscopic Survey (eBOSS); the first data from the second phase of the Apache Point Observatory (APO) Galactic Evolution Experiment (APOGEE-2), including stellar parameter estimates from an innovative data driven machine learning algorithm known as "The Cannon"; and almost twice as many data cubes from the Mapping Nearby Galaxies at APO (MaNGA) survey as were in the previous release (N = 2812 in total). This paper describes the location and format of the publicly available data from SDSS-IV surveys. We provide references to the important technical papers describing how these data have been taken (both targeting and observation details) and processed for scientific use. The SDSS website (www.sdss.org) has been updated for this release, and provides links to data downloads, as well as tutorials and examples of data use. SDSS-IV is planning to continue to collect astronomical data until 2020, and will be followed by SDSS-V.Comment: SDSS-IV collaboration alphabetical author data release paper. DR14 happened on 31st July 2017. 19 pages, 5 figures. Accepted by ApJS on 28th Nov 2017 (this is the "post-print" and "post-proofs" version; minor corrections only from v1, and most of errors found in proofs corrected