Transcript of Results of Survey on the role of Patient Groups in Research and their priorities for the future
1. Results of a survey onthe 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 PatientOrganisations and Research results
from a joint collaboration between Fabrizia Bignami EURORDIS Paloma
Tejada Franois Faurisson Julia Fitzgerald and the Anja Helm
Madeleine Akrich Centre de sociologie Vololona Rabeharisoa de
linnovation Florence Paterson Frdric Vergnaud Michel Callon
3. A few words on the works of the Centre desociologie de
linnovationContribution to Science and Technology Studies
understanding the rise of technical democracyForms 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 questionsLay knowledge and expertisePOs expertise:
to what extend is the claim to hold an expertisebased on the
mobilization of experiential knowledge coupled with theacquisition
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 medicaland health policies, and the contribution of
patientorganizationsMechanisms through which POs voice their
concerns in health-policy makingThe 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 characteristicsof participating POsAge of the
POsFinancial resourcesDiseases and clinical domains
concernedExistence of internal Scientific Committees
8. Rare diseases POs: newly createdorganisations Number of
years active 37% exist for 10 to 15 years 22% exist for less than 5
years
9. Membership 2/3 of (non umbrella) POs have less than 500
members Number of members Building its membership:100 a long-term
process 80 44% of the POs 60 created before 1970 40 33% have more
than 3000 21% members. 20 15% 13% 13% 6% 0 31% of the POs# POs
created between 2000 50 9 0 9 9 9 -9 49 99 00 99 < 50 -2 >3
0- 0- and 2009 have 50 to 10 50 00 10 150 members.
10. High diversity in POs annual budgets 25 000 3 000 100 000 0
of POs have less of POs have more than 3 000 than 100 000 10% less
than 300 5% more than 1 200 000 6% no budget
11. Diseases and clinical domains 110 diseases from various
clinical domains (1.3 million patients specifically represented)
Multisystemic Dermatology Neurology n=30 n=38 n=23Musculoskeletal
Ophthalmology Metabolic n=22 n=12 n=13Neuromuscular Oncology
Cardiovascular n=27 n=12 n=14 Haematology Others Umbrella n=10 n=59
n=15 15 Umbrella organisations from 10 countries (20 million
patients represented)
12. Integration of external scientific competenceswithin the
POs structure 56% of the POs have aDanemark 22 Scientific Committee
(174 Sweden 36 out of 309) NL 44 A very common device Spain 46
within French POs Belgium 47 Greater proportion among older POs:
80% of the POs Ireland 50 created before 1980 vs. UK 59 60% after
1980 Italy 60 45% of the ScientificGermany 69 Committees contribute
to the allocation of financial France 90 resources for research 0
20 40 60 80 100
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 funded81 % Basic research57%
Therapeutics56% Diagnosis54% Epidemiology / Natural history of the
disease46% Human and Social Science24% Assistance technologies /
Daily life19% Research infrastructures
15. Types of financial support(37% of the Pos)77% Initiating
and financing a specific research project75% Co-financing the
operating budget of a specific research project54% Financing the
acquisition of a specific research equipment (centrifuge,computer,
etc)47% Financing a fellowship for a young researcher39%
Co-financing meetings of researchers / clinicians30% Co-financing
training of researchers / clinicians
16. Financial support to research is linked to the POs budgets
and age % of POs % of POs POs annual total funding Date of creation
funding budget research researchBudget > 300.000 81% Before 1970
70%Budget between Between 1970 - 1979 61% 50% - 56%30.000 to
300.000 Between 1980-1989 47%Budget between 32% - 33%5000 to 30.000
Between 1990 -1999 35%Budget < 5000 11% -14% Between 2000-2009
30%
17. POs support to research Non-financial support to
research76% Actions aiming at creating links between patients,
researchers and physicians57% Helping to identify patients to
participate in clinical trials49% Providing information and
counseling for potential participants in clinical trials48%
Defining research projects by highlighting patients needs and
expectations45% Collaboration in clinical trials design30%
Participation in scientific committees within institutions28%
Launching campaigns for the collection of biological samples from
patients Financial support to research: 37%
18. POs experience ofcollaborationwith the
researchcommunity
19. POs experience of collaborationwith researchers
Relationship with research 15 12 34 19 5 teams (Close or distant)
NA Quality of research results ++ 22 13 38 71 (Encouraging or not)
+ - Information on research -- 15 16 33 13 7 results (Satisfying or
poor) 0 20 40 60 80 100
20. Priorities and obstacles tothe development ofresearch
21. Advances observed by the POs indifferent 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 Therapeutics 49 Diagnosis 40
Basic research 35 Strong priority 44 Absolute priority Epidem
iologyHum an and social sciences 43Assistive technologies 36
Infrastructures 36 0 10 20 30 40 50 60
23. Obstacles to the advance of research Lack of recognition of
your disease 21 19 13 11 Lack of multidisciplinary research 18 25
15 12 Lack of coordination between specialists major 23 28 12 10
(researchers and clinicians) important minor Difficulties to
identify patients 21 32 17 12 noneLow number of clinicians
specialised in your 39 29 9 5 disease/s Low number of researchers
working on 37 30 9 7 your disease/s 0% 20% 40% 60% 80% 100%
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.