2023-08-06 22:00:00
This is a particularly topical theme that has been chosen by the TRT-5 CHV for its annual Scientific Day (2023 edition): “Research data, data research”. A current topic, especially in HIV where the epidemiological data (to mention only these) are far from satisfactory (too time-shifted, too partial, insufficiently consolidated, etc.). The day is structured around three main questions: What data do we need to fight effectively once morest HIV, viral hepatitis and STIs? How to collect and process them, to promote research while respecting the rights of users? What is the role of associations in the production and promotion of the resulting knowledge? The day’s program is particularly rich with round tables, discussions with the audience and final summary. The day will start with a session asking “what data do we need?” “. It will be regarding “The organization of the surveillance of HIV, hepatitis and STIs in France: which tools for which objectives? This is an important subject as the collection of data has encountered technical difficulties in recent years and has even been the subject of criticism. The following will take part in this first round table: Dr. Florence Lot (Head of the HIV-Hepatitis B/C-STI unit within the Infectious Diseases Department of Public Health France). The Pre. Dominique Costagliola (member of the Academy of Sciences, Emeritus Research Director INSERM, Pierre Louis Institute of Epidemiology and Public Health) will speak on “Findings, questions, perspective on epidemiological surveillance”, while Pr Yazdan Yazdanpanah (Director of the ANRS ǀ MIE) will deal with an important issue: “Making the representativeness of target audiences in trials a reality”. The operational dimension will be addressed by Dr. Soraya Belgherbi (file manager, General Directorate of Health, Ministry of Health and Prevention) in a presentation titled: “What data for monitoring national sexual health policies? » Pre Christine Rouzioux (president of the Arcat association, qualified personality of the National Council for AIDS and viral hepatitis CNS) will discuss « the contribution of national health data and the application to HIV: what difficulties, what challenges? A second round table will be devoted to “research data for use in treatment recommendations”, with the very topical example of breastfeeding. The speakers will be Eva Sommerlatte (director of the Families Committee, member of the TRT-5 CHV), Dr. Christian Kahlert (Division of Infectious Diseases and Hospital Epidemiology, Hospital of Saint-Gall; Switzerland), Dr. Jeanne Goupil (Department of Infectious and Tropical Diseases, University Hospitals Paris-Seine-Saint-Denis, Avicenne-Jean Verdier). The followingnoon will open with a session entitled: “How should data be collected and processed? The experts selected for this exchange are: Anne Buisson (deputy director of the François Aupetit association, overcoming illness and Crohn’s and UC, member of the Ethics Committee of Inserm CEI); Maître Antoine Béguin (lawyer, lecturer at the University of Angers, member of the University’s Ethics Committee and of the Laboratory Council of the Jean Bodin Center) whose presentation will focus on “Demosan 2.0: better understanding the rights in health data in the midst of the digital shift”. It is on the theme: “Big data: what new compensation system can be imagined for people whose data is used for research purposes? » Catherine Aumond (general secretary of the AIDES association, vice-president of Corevih Centre-Val de Loire), while Pr. Éric Rosenthal (clinical research advisor / head of open science at ANRS-MIE) will return on “Data sharing: guaranteeing the balance between research opportunities and ethical issues”. It is on the theme “Research and anticipation of health risks: what recommendations?” that Pre Brigitte Autran (president of the Covars health risk monitoring and anticipation committee) will intervene, while Yvanie Caillé (founder of the Renaloo association, member of the National Ethics Advisory Committee and of the Covars) will ask regarding “How to promote ethics and the involvement of people in research? This is a completely different aspect that will be dealt with in the following session: that of the “place of associations in the production and dissemination of data”. This will take the form of a round table: “From identifying needs to setting up an appropriate (community) response: the VSE is coming to town”, with Adrien Esclade (deputy head of office, DGS), Paul-Emmanuel Devez (listening to Sida Info Service, member of the TRT-5 CHV)/Grisélidis, Bruno Spire (administrator of AIDES, director of research at Inserm) and Pr Olivier Épaulard (infectiologist at the Grenoble University Hospital, president of the Corevih Arc-Alpin). For their part, Barbara Sclafer (head of the health-justice mission of the Addiction Federation) Laurent Michel (researcher and administrator of the Addiction Federation) will deal with an important question: “When research data are not enough: advocacy for the application of DRR in the prison environment”. Tradition obliges, it is Hugues Fischer (Act Up-Paris, member of the TRT-5 CHV) who will make the closing remarks. As we can see, this Day is particularly rich in its themes and noted in its speakers; an excellent opportunity to deepen the issues of research data and their implementation in the response to HIV, hepatitis and STIs. The annual scientific day of the inter-associative collective TRT-5 CHV will take place on Wednesday September 27, 2023, at the Ministry of Health and Prevention, Salle Pierre Laroque, in Paris (14, avenue Duquesne). Information and inscription.
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