Results of a survey on the role of Patient Groups in Research and their priorities for the future
24
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
-
Upload
eurordis-rare-diseases-europe -
Category
Health & Medicine
-
view
594 -
download
1
description
Transcript of Results of a survey on the role of Patient Groups in Research and their priorities for the future
- 1. Results of a survey on the role of Patient Groups in Research and their priorities for the future Florence Paterson Centre de sociologie de linnovation, UMR CNRS 7185 - Mines-ParisTech Paris, France
- 2. 2010 Survey on Patient Organisations and Research
- EURORDIS
-
- and the
-
- Centre de sociologie de linnovation
- Fabrizia Bignami
- Paloma Tejada
- Franois Faurisson
- Julia Fitzgerald
- Anja Helm
- Madeleine Akrich
- Vololona Rabeharisoa
- Florence Paterson
- Frdric Vergnaud
- Michel Callon
- 3. A few words on the works of the Centre de sociologie de
linnovation
- 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
- 4. Research questions
- Lay knowledge and expertise
- POs expertise: to what extend is the claim to hold an expertise based on the mobilization of experiential knowledge coupled with the acquisition of certified knowledge?
- In what form do patients collectives mobilize experiential knowledge & certified knowledge: alignment, opposition or conjunction?
- The role of knowledge in the governance of medical and health policies, and the contribution of patient organizations
- Mechanisms through which POs voice their concerns in health-policy making
- The ways POs promote their expertise capacity in health policy-making
- 5. Aims of the Survey
- To evaluate POs support to research: in what ways and to what extent
- To learn about POs experience of collaboration with researchers
- To collect POs opinion on priorities and obstacles for rare disease research
- 6. Survey population
- Questionnaire sent to 772 POs
- 309 responses from 29 European countries
- (178 member + 131 non member POs)
- = 40% response rate
- 7. General characteristics of participating POs
- Age of the POs
- Financial resources
- Diseases and clinical domains concerned
- Existence of internal Scientific Committees
- 8. Rare diseases POs: newly created organisations Number of
years active
-
- 37% exist for 10 to 15 years
-
- 22% exist for less than 5 years
-
- 9. Membership Number of members 2/3 of (non umbrella) POs have
less than 500 members Building its membership: a long-term process
-
- 44% of the POs created before 1970 have more than 3000 members .
-
- 31% of the POs created between 2000 and 2009 have 50 to 150 members .
-
- 10. High diversity in POs annual budgets
- of POs have less than 3 000
- 10% less than 300
- 6% no budget
- 11. Diseases and clinical domains
- 110 diseases from various clinical domains
- (1.3 million patients specifically represented)
- 12. Integration of external scientific competences within the
POs structure
- 56% of the POs have a Scientific Committee (174 out of 309)
- A very common device within French POs
- Greater proportion among older POs: 80% of the POs created before 1980 vs. 60% after 1980
- 45% of the Scientific Committees contribute to the allocation of financial resources for research
- 13. POs support to Research
- 37 % of POs fund research
- but
- POs non-financial support to research, less visible, provides specific resources
- 14. 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
- 15. 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
- 16. 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%
- 17. 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%
- 18. POs experience of collaboration with the research community
- 19. POs experience of collaboration with researchers
- 20. Priorities and obstacles to the development of research
- 21. 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%
- Minor advances
- Human and social sciences 40%
- Assistive technologies 38%
- Epidemiology 38%
- 22. Degree of priority that should be given when allocating public funds & research areas
- 23. Obstacles to the advance of research
- 24. Conclusion
-
- 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.
-