terça-feira, outubro 24, 2006
Informação sobre tratamentos
Summary of the EATG's position on Information to Patients as presented to the Health and Consumer Intergroup in the European Parliament on October 3rd, 2006:
Information to patients is vital, both to save lives and improve quality of life.
Information concerns not merely treatments but how to live with chronic conditions. It should include the perspectives of other patients living with the condition as well as professionals.
Patients need information that is evidence-based, comprehensive, compares the risks and benefits of treatments and of no treatment, and is transparent as to source. It should be accessible to patients at different levels of experience and expertise, easy to use, in the patient's home language, and adapted to their culture.
HIV is a disease area which has led the way in the provision of independent information sources. Nearly all of these receive some funding from pharmaceutical companies, but do not depend exclusively on them. There is no reason why patient-led information and the organisations that supply it should be biased as long as they:
- provide evidence-based, comprehensive information
- are not dependent (entirely or mainly) on funding from a single industry source
- are transparent about their sources of funding
- have clear guidelines and contractual arrangements about what the funding is for, and not for
- and whose funding is in the form of unrestricted grants which do not dictate content.
EATG feels that information provided direct to the patient by drug companies, or by patient groups dependent predominantly or entirely on a single pharmaceutical company for funding, cannot satisfy the requirements for unbiased information. Pharmaceutical companies have a conflict of interest between the needs of patients and of their shareholders. They market treatments and are therefore unlikely to have an unbiased opinion about not taking their treatment. They are unlikely and usually unable to provide information about competitor products. And, regrettably, they have a history of concealing or failing to publicise research which reflects negatively on their products.
EATG is therefore in favour of information provided by 'expert patients' which have educated themselves as intermediaries between the complex world of medicine and the needs of patients in general. But it is not in favour of information provided direct to patients by the manufacturers of treatments and other medical products.