Results to be unveiled during the 6th Inserm meeting with patient associations held at the French Senate
In conjunction with the Senate Commission for Social Affairs, Inserm has organised the 6th meeting between national research representatives and patient associations, to be held on Thursday, 31 January 2013. More than twenty researchers and association representatives will provide first-hand accounts and develop dialogue with the senators in front of more than 250 participants. During this event, the results of a large survey conducted on some 600 researchers from Inserm laboratories will be published to shed light on relations with patient associations. According to the results, 81% of researchers surveyed are in contact with patient associations, half of which are regular contacts. More than 400 different associations were cited by name. Two thirds of researchers in contact with an association consider the fact that “direct contact with patients provides additional motivation to research activities” to be “useful” or “determining”.
This year, the 6th National Research and Patient Association meeting aims to review and prepare the future prospects for a process that is gathering momentum: not only do relations between the world of research and patient associations exist, they are expanding and are actually involved in research progress, and, as a consequence progress in terms of the health of our fellow citizens. From now on these meetings will be used as a driving force for innovation and transformation in terms of relations between research and society at large.
The survey was a Gram1 initiative (think-tank with patient associations) and was conducted on Inserm researchers in 2012 to improve knowledge and understanding of the type of relations (and their mechanics) that researchers forge with associations and how they perceive this partnership. The first results will be presented during this meeting.
The results show that researchers build up these relations over time. Relations increase in line with the researchers’ age and level of responsibility: 11% of researchers aged under 30 have ongoing relations with associations, 57% of researchers aged between 50-55 and 50% of 55-60 year olds.
In less than half of all cases, the researchers stated they received financial support. The amount over the total length of collaboration is extremely variable: lower than €40,000 in one out of four cases; and greater than €2,500,000 in 5% of cases. The researchers underlined the possibilities opened up by this support: seed-funding for projects and sponsorship of doctorates or post-doctorates. For their part, researchers support the associations in the field of scientific information for patients, outreach activities, participation in meetings and scientific monitoring. Researchers recognize the important role of scientific mediator, undertaken by associations for patients, meaning four out of five researchers agree with the following statement: “Patient associations are best placed to distribute information to the patients they represent”.
In response to the statement: “Being involved in patient associations risks impeding researchers’ scientific freedom”, 70% of the researchers said they did not agree, and this figure rose to 77% for those with ongoing relations with an association. When asked whether “involvement with a patient association hinders their activity by taking up too much of their time”, more than half the researchers disagreed (this figure again rose to nearly two thirds for researchers with ongoing relations with an association).
The first results of Cairnet demonstrate that patient associations are present in the world of researchers, which goes against the image of researchers ‘cut-off’ in their laboratories.
"A new impetus for health biology research." This is the ambition of Inserm’s Contract of Objectives, Means and Performance signed on Friday, February 4, 2022..