EATG position on information to patients

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 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 mother tongue, 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.
• They are not dependent (entirely or mainly) on funding from a single industry source.
• They are transparent about their sources of funding.
• They have clear guidelines and contractual arrangements about what the funding is for.
• The funding is provided as unrestricted grants which do not dictate content.

EATG feels that information provided direct to the patient by drug companies, or by patient groups predominantly or entirely depending on a single pharmaceutical company for funding, cannot satisfy the requirements for unbiased information. Pharmaceutical companies have a conflict of interest between patients needs and shareholder interests. 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 that reflects negatively on their products.

The EATG supports information provided by 'expert patients' which have educated themselves as intermediaries between the complex world of medicine and patient needs in general. The EATG does not endorse information provided directly to patients by the pharmaceutical industry and the manufacturers of other medical products.

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