Key Results from Science Europe and Global Research Council Surveys. Survey report

"Open Access Publishing Policies in Science Europe Member Organisations: Key Results from Science Europe and Global Research Council Surveys": D/2016/13.324/8.In 2016, Open Access (OA) to scholarly publications received renewed political attention as part of a wider agenda for ‘Open Science’ highlighted by the Dutch Presidency of the Council of the EU. Against this background, this survey report highlights some of the efforts made by public research organisations in Europe over the past few years to develop and implement OA policies. It also lists some remaining challenges that need to be met in order to facilitate and accelerate the transition towards full OA for all scholarly publications by 2020, as called for in the conclusions on ‘The Transition Towards an Open Science System’ adopted by the Council of the EU on 27 May 2016.This survey report presents an overview of the development of the OA policies of Science Europe Member Organisations (SE MOs) up to 2014; these are major European public Research Funding Organisations (RFOs) and Research Performing Organisations (RPOs). The report is based on information gathered through two surveys conducted in late 2012 and early 2014. The survey analysis, verification of data and consolidation of the report were carried out over the two years prior to the publication of the survey report, and include data relevant up to 2014.Peer reviewe

[The person of trust, a new tool in the physician-patient relationship.]

THE NOTION OF A PERSON OF TRUST: Introduced by the law dated March 4th 2002, the person of trust is there to accompany the patient in all his/her measures of care; this person is also conceived as an helper in medical decisions or when the patient participates in biomedical research protocols. DESIGNATION MODALITIES: Any adult, unprotected patient can designate a person of trust, whose intervention is not only limited to hospitalisation (the nursing staff are obliged to propose such a person), but can also intervene during care at home or at the doctor's. The designation is made in writing and can be revoked at any time. The person of trust can be a relative, a friend or even the treating physician. A SPECIFIC ROLE: The person of trust can be of help in medical measures in routine medicine when the patients needs to be accompanied, and in the case of diagnosis or serious prognosis, and when the patient is incapable of expressing him/herself

[Decision process in oncology: the importance of multidisciplinary meeting]

International audienceMultidisciplinary meeting (MDM) in oncology has been institutionalised in France by the Cancer Plan. This study aims to determine the place of MDM in the decision process. From November 2004 to July 2005, we observed 29 meetings at the Tours Hospital and 324 case presentations, 80 in orthopaedics, 151 in gastroenterology and 93 in chest medicine. Forty physicians attending the meetings answered a questionnaire exploring their opinions on MDM and the collegial decision. We found that MDM is mostly the place for technical discussions and that patients' wishes are rarely addressed. The different medical specialities are well represented but we observed that only physicians attend MDM. Decisions for straightforward cases are rapidly validated. For more complex clinical situations (25 to 40% of case presentations), the multidisciplinary approach allows to adapt guidelines or to choose alternative treatments. All the physicians interviewed express that MDM legitimates the medical decision. It occurs that they disagree with the RCP decision. We discuss how MDM impacts on the medical decision as well as the shift from the individual decision to the collective one, particularly in term of responsibility

Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.: Survey assessing data sharing in leukodystrophies

International audienceThe purpose of this study was to explore patient and family views on the sharing of their medical data in the context of compiling a European leukodystrophies database. A survey questionnaire was delivered with help from referral centers and the European Leukodystrophies Association, and the questionnaires returned were both quantitatively and qualitatively analyzed. This study found that patients/families were strongly in favor of participating. Patients/families hold great hope and trust in the development of this type of research. They have a strong need for information and transparency on database governance, the conditions framing access to data, all research conducted, partnerships with the pharmaceutical industry, and they also need access to results. Our findings bring ethics-driven arguments for a process combining initial broad consent with ongoing information. On both, we propose key item-deliverables to database participants

Communication of pharmacogenetic research results to HIV-infected treated patients: standpoints of professionals and patients.

International audienceThe aim of pharmacogenetic studies is to adapt therapeutic strategies to individual genetic profiles, thus maximising their efficacy and minimising the likelihood of adverse side effects. Since the advent of personalised medicine, the issue of communicating research results to participants has become increasingly important. We addressed this question in the context of HIV infection, as patients and associations are particularly concerned by research and therapeutic advances. We explored the standpoints of both research professionals and participants involved in a pharmacogenetic study conducted in a cohort of HIV-infected patients. The setting of the research protocol was followed over a 2-year period. Participants' standpoints were collected through a questionnaire and interviews were conducted with research professionals. Of 125 participants, 76% wished to receive individual results and 71% wished to receive collective results; 39% did not know when results might be expected. Communication of global research results is a principle that is generally accepted by professionals. Concerning individual feedback, the professionals felt that it was necessary if it could be of direct benefit to the participant, but they expressed doubts for situations with no recognised benefit. Our results highlight the necessity to consider this issue in greater detail. We suggest the need to anticipate the debates concerning individual feedback, to differentiate between situations and the importance of further investigations on the opportunities and modalities of communication. Finally, our work emphasised the opposite pressures between the pursuit of scientific knowledge and the therapeutic orientation of clinical trials

BMC Womens Health

BACKGROUND: The French national cancer institute (INCa) conducted a series of studies to assist decision-making in view of the implementation of organised cervical cancer screening that will be launched in 2018. The programme will concern all women aged 25-65 and targeted interventions will be developed for underscreened populations. This is an evolution from an equality-based approach to a step-by-step strategy of equity aiming to tackle health cancer inequalities that are avoidable and represents unfair differences. Here we present the work of the expert-group in ethics drafted by INCa to review the ethical issues prior to the programme implementation. DISCUSSION: We discuss the value of such a strategy and presents reflections with regard to issues of stigmatization, respect for individual freedom and autonomy. Indeed, the balance has to be found between the search for beneficence and the potential occurrence of perverse effects, which should be considered with particular attention. CONCLUSION: Moving toward an equity-oriented policy under a strategy of proportionate universalism faces a number of challenges, thus an overview of ethics and social sciences must be an integral part of the process

Le libre accès Une opportunité pour la recherche biomédicale

Open access within the scientific community depends on the scientific context and the practices of the field. In the biomedical domain, the communication of research is characterised by the importance of the peer reviewing process, the existence of a hierarchy among journals and the transfer of copyright to the editor. Biomedical publishing has become a lucrative market and the growth of electronic journals has not helped lower the costs. Indeed, it is difficult for today's public institutions to gain access to all the scientific literature. Open access is thus imperative, as demonstrated through the positions taken by a growing number of research funding bodies, the development of open access journals and efforts made in promoting open archives. This article describes the setting up of an Inserm portal for publication in the context of the French national protocol for open-access self-archiving and in an international context

[Open access :an opportunity for biomedical research].

International audienceOpen access within the scientific community depends on the scientific context and the practices of the field. In the biomedical domain, the communication of research results is characterised by the importance of the peer reviewing process, the existence of a hierarchy among journals and the transfer of copyright to the editor. Biomedical publishing has become a lucrative market and the growth of electronic journals has not helped lower the costs. Indeed, it is difficult for today's public institutions to gain access to all the scientific literature. Open access is thus imperative, as demonstrated through the positions taken by a growing number of research funding bodies, the development of open access journals and efforts made in promoting open archives. This article describes the setting up of an Inserm portal for publication in the context of the French national protocol for open-access self-archiving and in an international context