Using a qualitative research approach, this article addresses a gap in the project management literature that is the coexistence of exploitation and exploration learning dynamics within a single large-scale and complex project. We investigate the case of the New Sodium Fast Reactor (NewSFR) project, a large-scale, complex, and multi-actor project aimed at designing a new technology of nuclear reactor. Through a grounded, interpretive, and multilevel methodological approach, we characterize NewSFR as a hybrid project that combines high exploration and exploitation goals. We investigate the hybridizing process, which takes into account long-term temporal dynamics and interactions between two levels of analysis: the knowledge domains within the project and the project itself. This enables us to report three major contributions. First, at a macro-level, we highlight the ambiguity related to the difficulty for project members to agree on either exploratory or exploitative NewSFR status, which leads us to qualify it as a hybrid project. We then investigate the case dynamically and at a micro-level (i.e., the level of knowledge domains within the project). We emphasize the temporal processes underlying the hybridization, and how this hybridization evolves in time through two data-based concepts: deliberate exploration and emerging exploration. We identify and categorize the main drivers of deliberate and emerging exploration throughout the project, and highlight how these drivers affect project management processes. Finally, we discuss the issue of managing such hybrid projects.

Genetic testing is accepted to be a common practice in many medical specialties. These genetic tests raise issues such as respect for basic rights, how to handle results and uncertainty and how to balance concerns for medical confidentiality with the rights of third parties. Physicians need help to deal with the rapid development of genomic medicine as most of them have received no specific training on the medical, ethical, and social issues involved. Analyzing how these professionals integrate genetic testing into the patient-provider relationship is essential to paving the way for a better use of genomics by all. We conducted a qualitative study comprising a series of focus groups with 21 neurologists and endocrinologists about their genetic testing practices in the western part of France. The interviews were transcribed and analyzed for major themes. We identified an automated care management procedure of genetic testing that affects patient autonomy. The simple fact of having a written consent cannot justify a genetic test given the stakes associated with the results. We also suggest orienting practices toward a systemic approach using a multidisciplinary team or network to provide resources for dealing with uncertainties in interpreting results or situations that require additional technical or clinical skills and, if necessary, to allow for joint consultations with both a geneticist and a non-geneticist medical specialist.

Background Until very recently, preconception genetic testing was only conducted in particular communities, ethnic groups or families for which an increased risk of genetic disease was identified. To detect in general population a risk for a couple to have a child affected by a rare, recessive or X-linked, genetic disease, carrier screening is proposed in several countries. We aimed to determine the current public opinion relative to this approach in France, using either a printed or web-based questionnaire. Results Among the 1568 participants, 91% are favorable to preconception genetic tests and 57% declare to be willing to have the screening if the latter is available. A medical prescription by a family doctor or a gynecologist would be the best way to propose the test for 73%, with a reimbursement from the social security insurance. However, 19% declare not to be willing to use the test because of their ethic or moral convictions, and the fear that the outcome would question the pregnancy. Otherwise, most participants consider that the test is a medical progress despite the risk of an increased medicalization of the pregnancy. Conclusion This first study in France highlights a global favorable opinion for the preconception genetic carrier testing under a medical prescription and a reimbursement by social security insurance. Our results emphasize as well the complex concerns underpinned by the use of this screening strategy. Therefore, the ethical issues related to these tests include the risk of eugenic drift mentioned by more than half of the participants.

Portés par les progrès de la biologie moléculaire, dans un élan de prévention, les tests génétiques permettent dorénavant d’envisager la prise en charge précoce et personnalisée de certaines maladies chroniques. À travers l’analyse de l’impact d’un dispositif public de masse tel que le dépistage néonatal systématique de la mucoviscidose, cet article entend expliciter l’appareillage métrologique qui sous-tend son déploiement et engendre la construction d’un état clinique « désincarné ». Loin de faire disparaître le travail clinique, la standardisation des mesures du risque pathologique, en amont du diagnostic, génère l’émergence de zones grises. On assiste ainsi à l’extension de la définition de la maladie se traduisant par la démultiplication et la complexification des états cliniques se situant entre le normal et le pathologique. L’effort de rationalisation des procédures se heurte au haut niveau d’incertitudes scientifiques et cliniques qui pose le problème de la classification des êtres à risque. Face à des scénarios inédits, la construction d’une médecine à risque à grande échelle consolide, de manière paradoxale, l’individualisation de la prise en charge.

BackgroundQuality Improvement Programs (QIP) in cystic fibrosis (CF) care have emerged as strategies to reduce variability of care and of patient outcomes among centres facilitating the implementation of Best Practices in all centres. The US CF Foundation developed a Learning and Leadership Collaborative program which was transposed in France in 2011. Patient and parent involvement (P&PI) on the local quality teams (QTs) is one dimension of this complex intervention. The conditions and effects of this involvement needed to be evaluated.MethodsIn all settings, patients and parents were recruited by their centre care team. They were trained to QI method and tools and contributed their own expertise to improve the process of care. This involvement has been analyzed in the frame of the whole process evaluation. Observations and interviews conducted during the course of the first training year explored the motivations of the patients and parents to participate and the vision of the health care teams. A research study was carried out after three years with the patients/parents and the professionals to assess the French QIP’s effectiveness using a questionnaire to report their opinions on various components of the program, including their experience of P&PI. Responses were analyzed in view of identifying consensus and dissensus between the two groups.ResultsAt the introduction of the program, P&PI was an opportunity for healthcare providers to reflect on their conceptions of these individuals both as patients and as healthcare system users. Curiosity about the teams’ functioning, the various center organizations and outcomes led patients to overcome their initial barriers to participation. Seventy-six people including 12 patients/parents from the 14 pilot centres responded to the questionnaire after 3 years. Consensus between professionals and patients/parents was high on most items characterizing the performance of the QIP, QT effectiveness and QT functioning. Patients, parents and professionals agreed on the main characteristics of care such as an optimized organization, multidisciplinary care and patient-centredness. Regarding the use of patient electronic records, the use of care guidelines or the organization of support in the patient community, responses were not consensual amongst patients/parents and a source of dissensus between the two groups. All agreed that the French QIP created good conditions for their involvement. In the end, both groups agreed that it was difficult to attribute the paternity of some changes specifically to any member in the team.DiscussionPerspectives such as an educational framework to develop the skills and behaviors of professionals engaged in collaborative practice with patients and families and large patient experience surveys could be used to capture patients’ experience of care in the improvement work.ConclusionSuccess factors for patient/parent long-term involvement in QIPs have been identified. Answers to questions raised by the stakeholders about the feasibility, efficiency an...