Defining patient's experiential knowledge: Who, what and how patients know. A narrative critical review.

Experiential knowledge is today increasingly valued in health-care practices, public health policies and health research and education programs. However, despite popular and institutional success, the concept remains loosely defined with the result of weakening its heuristic scope and paving the way for its commodification. In this article, we seek to provide a finer characterisation of patients' experiential knowledge's features and specificities through a critical narrative review of humanities and social science (HSS) literature published in English and French (1976-2021). Inspired by Jovchelovitch's analysis of social knowledge, we seek to highlight the diversity and plurality of forms and articulations of knowledge that characterise experiential knowledge, as well as the gradual, dynamic and entangled process that leads from experience to knowledge and expertise. Our analysis points to the need for future research to adopt a resolutely pragmatic and situated orientation in the study of experiential knowledge and the new figures of the contemporary patient that they help to create.

How has the future investment program stimulated research and innovation in health?

Ten years after the launch of the Future Investment Program (Programme d'Investissement d'Avenir, PIA) and the implementation of these tools, one of Giens' roundtable workshop wanted to further explore the impact of PIA on health research and innovation with the aim of preparing action reports (bibliometrics, valuation, reputation) based on 2019 findings and the history of PIA deployment in relation to the healthcare sector; to analyze the development of the industrial sector vis-a-vis the PIA actions and to examine how the specific actions and the healthcare sector in general were able to duly articulate themselves, or, take form, given existing structures or organizations and contribute to site policies through Idex/Isite. Five success keys have been identified, which should serve as a strategic compass for future action plans to develop health innovation: Full trust governance between the project manager and the institution, driven by project objectives; An increased role of universities in the steering of PIA objects, joining together in a federation, in a site policy with the Hospital University Centres and Public Scientific and Technological Establishments; A simplification of public/private partnership schemes, in the nature of the Assessment and Action Plans, and in the responsiveness of the institutions; help with the development of local ecosystems, the fostering and support of young researchers; early cross-fertilization between the academic and industrial worlds.

Le rôle de la «â€ˆnarration située ¼ en éducation thérapeutique des patients (ETP) : de l'information à la relation.

INTRODUCTION: This dossier brings together different proposals presented during the closing conference of the West Syndrome research program: construction of knowledge and singularity of family experiences (Fam-West). It was devoted to the therapeutic education of the patient (TPE) and its possible deployment in the context of the management of rare diseases. AIM OF THE STUDY: Today, the communication approach of the common formal TPE could be qualified as informational. In this approach, knowledge is transmitted in a linear fashion from the caregiver to the patient and the development of the device is based on the message, the communication supports and their adaptation to the target. But the TPE approach could also be thought of as one of the possible places for developing experiential knowledge, through which the knowledge and skills that patients can develop through illness are recognized. RESULTS: This dossier therefore intends to document the forms of incursion of the narrative within a specific care relationship that is the TPE, allowing at the same time to shed light on the way in which the health actors seize the narrative question in different contexts and also to bring new avenues of questioning relating to the relationship of TPE between caregivers, patients and those around them. CONCLUSIONS: It is from the angle of disciplinary dialogue that the place of storytelling in TPE has been questioned. This file thus crosses approaches in fundamental or interventional human and social sciences, engineering approaches or those of expert practitioners and patients who put theories and tools to work to bring about a "relational TPE" tomorrow by documenting its limits as well as its potential.

A mouse model of pharyngeal dysphagia in amyotrophic lateral sclerosis.

We recently established that the SOD1-G93A transgenic mouse is a suitable model for oral-stage dysphagia in amyotrophic lateral sclerosis (ALS). The purpose of the present study was to determine whether it could serve as a model for pharyngeal-stage dysphagia as well. Electrophysiological and histological experiments were conducted on end-stage SOD1-G93A transgenic mice (n = 9) and age-matched wild-type (WT) littermates (n = 12). Transgenic mice required a twofold higher stimulus frequency (40 Hz) applied to the superior laryngeal nerve (SLN) to evoke swallowing compared with WT controls (20 Hz); transgenic females required a significantly higher (P < 0.05) stimulus frequency applied to the SLN to evoke swallowing compared with transgenic males. Thus, both sexes demonstrated electrophysiological evidence of pharyngeal dysphagia but symptoms were more severe for females. Histological evidence of neurodegeneration (vacuoles) was identified throughout representative motor (nucleus ambiguus) and sensory (nucleus tractus solitarius) components of the pharyngeal stage of swallowing, suggesting that pharyngeal dysphagia in ALS may be attributed to both motor and sensory pathologies. Moreover, the results of this investigation suggest that sensory stimulation approaches may facilitate swallowing function in ALS.

Novel sample preparation method for molecular detection of Mollicutes in cell culture samples.

Research laboratories, raw materials and media suppliers as well as the biopharmaceutical industry face recurrent contamination with Mollicutes. Culture-based detection methods are very slow (28 days) and could ideally be replaced by nucleic acid testing (NAT) for rapid result. These methods are nonetheless hampered by their companion sample preparation methods. They are limited by the volume tested (0.1 to 5 mL), the protein/nucleic acid content they can accommodate and are generally performed in an open environment. The processing of low volumes of complex matrices is associated to several issues such as poor representativeness, low sensitivity, inhibition and false positives. The novel sample preparation method described in this study has been developed to overcome these limitations and to process 20-mL samples containing high loads of eukaryotic cells. A dual-membrane device is coupled to magnetic bead purification. In one single and closed device, eukaryotic cells and microorganisms are separated, contaminants are concentrated, lysed and corresponding nucleic acids are collected. This novel sample preparation method has been tested with 9 different Mollicutes. The ability to detect the contaminants down to 0.6 CFU/mL by real-time PCR among hundreds of millions of CHO-S cells (Chinese hamster ovary cells, adapted to serum-free suspension culture), without biological pre-enrichment, has been demonstrated. The novel device has been compared to manual silica spin columns, which remain the gold standard in most laboratories. These columns failed to yield the same limit of detection and reproducible results without separating mammalian cells from contaminants. Co-culture experiments have shown that the novel method allows detection of Mollicutes grown for days in presence of mammalian cells, despite the fact that these microorganisms can adhere to eukaryotic cells or invade them. The co-culture data also suggest that the novel sample preparation device might improve the live/dead cells discrimination by removing free nucleic acids from the matrix.

Alternative medicines for AIDS in resource-poor settings: insights from exploratory anthropological studies in Asia and Africa.

The emergence of alternative medicines for AIDS in Asia and Africa was discussed at a satellite symposium and the parallel session on alternative and traditional treatments of the AIDSImpact meeting, held in Marseille, in July 2007. These medicines are heterogeneous, both in their presentation and in their geographic and cultural origin. The sessions focused on the role of these medications in selected resource poor settings in Africa and Asia now that access to anti-retroviral therapy is increasing. The aims of the sessions were to (1) identify the actors involved in the diffusion of these alternative medicines for HIV/AIDS, (2) explore uses and forms, and the way these medicines are given legitimacy, (3) reflect on underlying processes of globalisation and cultural differentiation, and (4) define priority questions for future research in this area. This article presents the insights generated at the meeting, illustrated with some findings from the case studies (Uganda, Senegal, Benin, Burkina Faso, China and Indonesia) that were presented. These case studies reveal the wide range of actors who are involved in the marketing and supply of alternative medicines. Regulatory mechanisms are weak. The efficacy claims of alternative medicines often reinforce a biomedical paradigm for HIV/AIDS, and fit with a healthy living ideology promoted by AIDS care programs and support groups. The AIDSImpact session concluded that more interdisciplinary research is needed on the experience of people living with HIV/AIDS with these alternative medicines, and on the ways in which these products interact (or not) with anti-retroviral therapy at pharmacological as well as psychosocial levels.

Impact of CEDIT recommendations: An example of health technology assessment in a hospital network.

OBJECTIVES: The objective of this study is to assess the impact of CEDIT (French Committee for the Assessment and Dissemination of Technological Innovations) recommendations on the introduction of technological innovations within the AP-HP (Assistance Publique-Hôpitaux de Paris), the French hospital network to which this body is attached. METHODS: In 2002, a study based on semidirective interviews of fourteen people affected by these recommendations and a case study relating to thirteen recommendations issued between 1995 and 1998 were conducted. RESULTS: The CEDIT is very scientifically reputable among interviewees. There is generally widespread interest for the recommendations. They are used as decision-making tools by administrative staff and as negotiating instruments by doctors in their dealings with management. Based on the case study, ten of thirteen recommendations had an impact on the introduction of the technology in health establishments. One recommendation appears not to have had an impact. Furthermore, the impact of two technologies was impossible to assess. CONCLUSIONS: This study highlights the significant impact of recommendations arising from a structure that is attached to a hospital network and the good match between CEDIT's objectives and its assignments.

An improved electronic microarray-based diagnostic assay for identification of MEFV mutations.

Recent technological advances, such as DNA chip devices that allow automated, high-throughput genotyping, promise to considerably improve the detection capability of single-nucleotide polymorphisms (SNPs) in clinically relevant genes. We used the NanoChip(R) Molecular Biology Workstation (Nanogen, www.nanogen.com) and recently introduced microelectronic array technology to develop a detection method for the more frequent mutations involved in familial Mediterranean fever (FMF), an autosomal recessive disease that affects several ethnic groups in the Mediterranean population, whose early diagnosis is crucial if severe complications are to be prevented. We adapted the previously described Nanogen procedures to FMF mutation analysis, introducing modifications that notably improve the technique. First, as the original procedure makes use of costly dye-tagged reporter sequences, we devised a universal reporter strategy, which was first evaluated and validated on the robust, previously established factor V Leiden and factor II (prothrombin) NanoChip diagnostic assays. FMF (MEFV), factor V (F5), and factor II (F2) genotypes identified using this improved system were totally concordant with results of other genotyping methods (denaturing gradient gel electrophoresis [DGGE], SSCP, and RFLP analysis). Second, we showed that the target sequences loaded on the NanoChip cartridges can be rehybridized several times in a highly reproducible manner, allowing sequential analysis of mutations. Thus, we devised a strategy that allows us to monitor the possible interference of additional mutations or SNPs at probe or stabilizer sequences. Finally, a comparative cost per sample analysis demonstrates that the accurate and reproducible FMF mutation detection assay we developed can be readily implemented in the clinical laboratory setting at reasonable expense.