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Results of a survey on the role of Patient Groups in Research and their priorities for the future Florence Paterson Centre de sociologie de l’innovation, UMR CNRS 7185 - Mines-ParisTech Paris, France
2010 Survey on Patient Organisations and Research
Centre de sociologie de l’innovation
results from a joint collaboration between
A few words on the works of the Centre de sociologie de l’innovation
Contribution to Science and Technology Studies
understanding the rise of “technical democracy”
Forms of participation of civil society organizations in scientific and technical activities and debates
impact on the modes of production of knowledge
and on scientific practices
upshot on the emergence and the increase of collective mobilizations around science issues
POs’ non-financial support to research, less visible, provides specific resources
Areas of research funded 81 % Basic research 57% Therapeutics 56% Diagnosis 46% Human and Social Science 19% Research infrastructures 54% Epidemiology / Natural history of the disease 24% Assistance technologies / Daily life
Types of financial support (37% of the Pos) 47% Financing a fellowship for a young researcher 54% Financing the acquisition of a specific research equipment (centrifuge, computer, etc) 77% Initiating and financing a specific research project 75% Co-financing the operating budget of a specific research project 39% Co-financing meetings of researchers / clinicians 30% Co-financing training of researchers / clinicians
Financial support to research is linked to the POs’ budgets and age POs’ annual total budget % of POs funding research Budget > 300.000 € 81% Budget between 30.000 to 300.000 € 50% - 56% Budget between 5000 to 30.000 € 32% - 33% Budget < 5000 € 11% -14% Date of creation % of POs funding research Before 1970 70% Between 1970 - 1979 61% Between 1980-1989 47% Between 1990 -1999 35% Between 2000-2009 30%
POs’ support to research 76% Actions aiming at creating links between patients, researchers and physicians 49% Providing information and counseling for potential participants in clinical trials 57% Helping to identify patients to participate in clinical trials 30% Participation in scientific committees within institutions 45% Collaboration in clinical trials design 48% Defining research projects by highlighting patients' needs and expectations 28% Launching campaigns for the collection of biological samples from patients
Non-financial support to research
Financial support to research: 37%
POs’ experience of collaboration with the research community
POs’ experience of collaboration with researchers
Priorities and obstacles to the development of research
Advances observed by the POs in different research areas (5 last years)
Major vs. important advances
Basic research 15% vs. 27%
Diagnosis 13% vs. 24%
Human and social sciences 40%
Assistive technologies 38%
Degree of priority that should be given when allocating public funds & research areas
POs’ efforts for creating collectives of researchers, clinicians & POs around the specific diseases they are concerned with appears as being for them a priority action in the support / development of research.
POs’ support to research concern a large range of research areas (basic, therapeutic, social and human sciences…).
Although financial support to research is the more visible form of support, a large part of their involvement consist in activities providing non-financial support to research.
POs have limited budgets, but rare disease research benefits from their specific resources: contacts and trust between members & their expertise on the diseases they are concerned with.