Being involved as patient organisations as the driving force behind a clinical trial
By being the driving force behind a clinical trial we mean that the patient organisation actively promotes and pushes for the performance of a clinical trial or the development of a new treatment.
When a patient organisation is the driving force behind a clinical trial they have the chance to form the trial in a way that would fit the needs of the patients they represent. There are many levels in which a patient organisations can be the driving force of a clinical trial. To find out in what way patient organisations are actively involved in clinical trials as the driving force behind a clinical trial we asked our respondents:
Is (Has) your patient organisation (been) the driving force behind a clinical trial?
Overall 23 % of the survey’s respondents showed to have experience in being the driving force behind a clinical trial.
More in detail; 39% of all respondents said that they were actively involved in lobbying for (the development) of a clinical trial for their condition as can be read in the descriptions beneath:
- “ I am currently pushing for research in a specific area of the illness”
- “Lobby to stop a trial from being halted (START TRIAL)”
- “Lobbied parliament, royal colleges etc. For the need for research of the management of the illness”.
- “Lobbying and campaigning for trials on quality of life issues in EU”.
- “We encourage relevant medical experts to conduct trials; both verbally in conferences and by providing funding for research”.
23% of all respondents raised funds for clinical trials, following a mere 21% that actually co finance(s)d a clinical trial.
A further 19% of respondents developed a clinical research protocol and another 14 % had experience getting a research team together.
10% of the respondents described other ways in which they were involved as a driving force in clinical trials. Examples range from being involved in the recruitment criteria for research subjects, building networks to managing contacts and combining research efforts between different researchers for one clinical research study.
As one of the respondents described:
“ I am an expert patient on the various appraisals of a new biologic treatment for my condition and work with others in my condition’s community in the UK. Together we have identified areas where further research is needed”.
Please click here for the graph on the involvement of patient organisations as a research
Regional differences in being involved as a driving force behind a clinical trial
Respondents from the Southern European region are more frequently involved than respondents from the other regions, in every category of being involved as the driving force e.g. lobbying, financing, raising the funds, developing the clinical trial protocol in clinical trials etc. (annex).
Overall regions compared
North-Western Europe
Central and Eastern Europe
Southern Europe
Disease-group specific differences in being involved as a driving force behind a clinical trial
Respondents that represent rare disease patient organisations are more frequently involved in raising funds for a clinical trial while the representatives of common disease patient organisations show a higher frequency of being involved in developing the clinical research protocol.
Overall comparing the"common" with the "rare" condition patientorganisations
Patient organisations representing the "common" conditions
Patient organisations representing the "rare" conditions
Please click here for examples of clinical trials and research in which patient organisations have been involved on the level of being a driving force,that were described by the survey's respondents
Please click here for examples of clinical trials and research in which patient organisations have been involved on the level of being a driving force,that were described by the survey's respondents