The issue of information to patients is currently being discussed at European level notably within the framework of the EU Pharmaceutical Forum and there is much debate over what information should be provided and who should provide that information.
One of Europa Donna’s 10 goals is to ensure that all women fully understand the treatment options proposed to them which includes being informed about clinical trials.
The Coalition suggests that better cooperation between patient advocacy groups and scientists would create more awareness of clinical trials and as a result may encourage more patients to be involved in them.
However at the moment, there is no standard method to convey this information, leaving it up to the patients to request it from their doctor.
Europa Donna holds an annual Advocacy Training Course in order to keep advocates involved of developments in research, they have also produced an article entitled ’An active role for patients in clinical research’ which is to be published in Drug Development Research.
Other EPHA member position on clinical trials: EATG position paper on HIV/AIDS clinical trials and drug users
