Concluding remarks
An interesting finding of this study was that the pharmaceutical industry reported to rarely involve patient organisations, while patient organisations reported being involved quite often. This is probably due to the different view of the contact the two parties might have. Patient organisations might have provided information or advised companies, but the information has been perceived as informal and not been taken into consideration by the company. Furthermore, the results do not give information on the regularity of contact. Patient organisations may have gotten in contact once. The pharmaceutical representatives indeed noted that contacts had been irregular and perceived them as informal. In further studies the regularity and type (formal or informal) of contact should be further investigated to get a better view on how patient organisations are involved.
Another main finding was that the pharmaceutical industry appears hesitant towards patient involvement and only grants patient organisations lower levels of involvement; for recruitment, providing of information and pharmaceutical companies want the input from patient organisations but still want to be able to decide whether or not they use this input. From the interviews took in the inventory it turns out that patient organisations however, want more decision-making power and to be involved in the whole process. So why does the pharmaceutical industry not want to involve patient organisations on higher levels, granting them more decision-making power? Main reasons mentioned by the industry representatives were that they were not aware of patient involvement or did not see what the added value of involving patient organisations would be. They furthermore mentioned many barriers such as patient organisations not being professionally organized, regulatory restrictions and ethical problems that could arise when the two parties would interact.