Being involved in a clinical trial as co-researcher
A patients’ representative is considered to be a co-researcher when he or she carries out research related tasks on behalf or as part of a research team. Having a patient representative involved as co-researcher in a research team can provide new insights into the way the trial is performed.
To find out in what way representatives of patient organisations are involved in clinical trials as a co-researcher we asked our respondents:
Is (Has) your patient organisation (been) involved in a clinical trial as a co-researcher?
Overall 29% of the survey’s respondents showed to have experience in being a co-researcher in a clinical trial.
In more in detail; 42 % of all respondents were involved in translating research results of a clinical trial to patient friendly information. This was either done by translation into another language or being a co-author on a scientific paper.
35% of all respondents stated that they were involved in gathering information for the clinical trial. The information that was gathered according to the respondents differed between research studies, some examples:
- “I was co-author on an article on spinal fractures in condition x. Investigation was partly based on patient questionnaires”.
- “Our members identified the subject of a trial as being the most important issue that needs addressing by using an online poll (agenda setting)”.
- “Reporting on the progression of the study”.
- “Reporting on the end points of Major Tests”.
An additional 26 and 22% of all respondents interviewed patients or lead a focus group discussion or session that was part of the clinical trial.
Furthermore;,19% of all respondents co-wrote a scientific article on the research in the clinical trial.
6% of all respondents were involved in other ways. Descriptions of the involvement differed significantly. The most common descriptions:
- “We participated in the writing and spreading of questionnaires for the use in clinical trials”.
- “We provided additional clinical evidence”.
- “We recruited patients to focus groups”.
- “When clinical trials –are supported financially by organisation- we take care of the promotion of the results”.
- “The society asked its members to identify the single most important research topic that would help them lead a more normal life-this was done using an online poll. The society then worked with a Haematologist and a Microbiologist to produce a research proposal for which funding is currently sought”.
- “We helped with the gathering of the data and with the statistical analysis”.
Regional differences in being involved as a co-research in a clinical trial
Responding patient organisations from Southern and Central Eastern Europe show a higher frequency of being involved in interviewing patients, leading focus groups and the gathering of information in clinical trials.
Overall regions compared
North-Western Europe
Central and Eastern Europe
Southern Europe
Disease-group specific differences in being involved as a co-researcher behind a clinical trial
Patient organisations representing a common condition tend to be more frequently involved in reviewing a scientific paper on a clinical trial as well as being involved in gathering information for the clinical trial in comparison to the respondents representing rare disease patient organisations
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 the graph on the involvement of patient organisations as a research subject in clinical trials.
Please click here for examples of clinical trials and research in which patient organisations have been involved on the level of being a research subject,that were described by the survey's respondents