Patients have a fundamental right to request and receive information about their disease and the relevant medication from any source that they choose, the Association of the British Pharmaceutical Industry (ABPI) has said in its response to the Consumers' Association consultation.
The ABPI said there were two main advantages to patients undertaking greater involvement and participation in their own healthcare:
The ABPI response stresses that the current regulatory framework results in patients' access to good quality information about medicines being restricted and inequitable.
There is currently a two-tier access, whereby motivated, privileged and informed customers can access information about medicines more easily than those who are less interested. And European citizens are being increasingly disadvantaged by the regulations in comparison with other countries, such as the USA, where patients have the freedom to access information across a wide range of sources.
Nor do patients, carers and the public have direct access to factual, non-promotional information from pharmaceutical companies on diseases and treatment options - despite the fact that companies are well qualified to meet many of these needs.
"All patients should have the fundamental right to request and receive information from any source they choose," says the ABPI response. Disease awareness campaigns and information that encourages patients to work positively in tackling their disease - both activities supported by the pharmaceutical industry - can make a valuable contribution to outcomes.
Patient information leaflets (PILs) - contained within medicine packs - have essentially become part of the regulatory dossier and, in many cases, cannot provide adequate information about medicines to patients.
The ABPI response stresses the need to recognise that all stakeholders, including the pharmaceutical industry, have a role to play in the provision of information to the public. All health information providers should adopt best practice guidelines to ensure consumers understand the context in which information is being provided.
"There needs to be a realistic response by regulatory authorities recognising needs and demands of consumers. The internet is driving developments in these areas at a very rapid pace," says the response.
"The approach should be to work with the technology and other stakeholders to improve standards for European citizens and not to try to deny access to knowledge by consumers."
For further information, please contact: ABPI Press Office 020 7747 1410