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

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 ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],results from a joint collaboration between

A few words on the works of the Centre de sociologie de l’innovation ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Research questions ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Aims of the Survey ,[object Object],[object Object],[object Object]

Survey population ,[object Object],[object Object],[object Object],[object Object]

General characteristics of participating POs ,[object Object],[object Object],[object Object],[object Object]

Rare diseases POs: newly created organisations Number of years active ,[object Object],[object Object]

Membership Number of members 2/3 of (non umbrella) POs have less than 500 members Building its membership: a long-term process ,[object Object],[object Object]

High diversity in POs’ annual budgets ,[object Object],[object Object],[object Object],¼ of POs have more than 100 000 € 5% more than 1 200 000 € 100 000 € 3 000 € 25 000 € 0 €

Diseases and clinical domains ,[object Object],[object Object],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

Integration of external scientific competences within the POs structure ,[object Object],[object Object],[object Object],[object Object]

POs support to Research ,[object Object],[object Object],[object Object]

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 ,[object Object],[object Object]

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) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Degree of priority that should be given when allocating public funds & research areas

Obstacles to the advance of research

Conclusion ,[object Object],[object Object],[object Object],[object Object]

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

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