Results of Survey on the role of Patient Groups in Research and their priorities for the future

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Florence Paterson, Ecole des Mines, France

Florence Paterson, Ecole des Mines, France

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  • 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 l’innovation, UMR CNRS 7185 - Mines-ParisTech Paris, France
  • 2. 2010 Survey on Patient Organisations and Research
    • EURORDIS
      • and the
      • Centre de sociologie de l’innovation
    • Fabrizia Bignami
    • Paloma Tejada
    • François Faurisson
    • Julia Fitzgerald
    • Anja Helm
    • Madeleine Akrich
    • Vololona Rabeharisoa
    • Florence Paterson
    • Frédéric Vergnaud
    • Michel Callon
    results from a joint collaboration between
  • 3. 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
  • 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 patient’s 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
    • ¼ of POs have less than 3 000 €
    • 10% less than 300 €
    • 6% no budget
    ¼ of POs have more than 100 000 € 5% more than 1 200 000 € 100 000 € 3 000 € 25 000 € 0 €
  • 11. Diseases and clinical domains
    • 110 diseases from various clinical domains
    • (1.3 million patients specifically represented)
    15  Umbrella organisations from 10 countries (20 million patients represented) Neurology n=30 Ophthalmology n= 12 Oncology n=12 Others n=59 Dermatology n=23 Metabolic n=13 Cardiovascular n=14 Umbrella n=15 Multisystemic n=38 Musculoskeletal n=22 Neuromuscular n=27 Haematology n=10
  • 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.