Information to Patients

To help us represent patients' views, we would appreciate it if you could take five minutes to complete our survey, which is anonymous and confidential. The data will be used to influence policy makers in the European Parliament.

We believe that ALL patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to all kinds of information about their health, medical conditions and the availability of treatments including knowledge of the best available management for their disease. It is a question of solidarity, equity and patients’ rights.

We would draw attention to, and agree with the assertion in the Commission’s legal text that patients have a “legitimate need” for information.

From our perspective EU patients/citizens need factually accurate, reliable, easily understandable information to be able to make informed decisions. They need to understand their condition and do want to receive information on treatments available.

As patients, we welcome information from different sources including the pharmaceutical industry, provided they meet the above-mentioned criteria, the ownership of the source is clearly identified and agreed safeguards are in place.

Such information would enable patients/citizens all over Europe to:

As patients, we recognise that governments fear increased pressure on health care budgets since informed patient might demand better and more effective drugs for his/her diseases.

However, we consider this a positive consequence of better and more information to the public.

We argue that informed patients are more efficient and prudent users of health care resources. Often underprescribing, non-compliance or irrational prescribing are a heavier overall financial burden for health care and social security budgets. Better disease management increases the quality of life and well-being of patients.

Information should be seen as an enabling tool to improve health care for all EU citizens - not as a cost/control instrument for EU Member States.

Those suspicious of patient information base their arguments on the US experience of advertising. However, advertising is not equivalent to the provision of information. While we do not want US style advertising, European patient groups are happy to contribute to a more thoughtful and constructive debate, to find a solution for Europe appropriate to the Information Age.

Please take five minutes to complete our survey.

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The Patient can be as knowledgeable as the expert, but is uniquely placed to have a holistic view of their condition

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