Health information
is a fundamental and necessary part of healthcare. However, the development of
direct to consumer advertising, of disease awareness (or "disease mongering")
campaigns, "compliance programs", and direct and indirect pharmaceutical
industry support of patient's organizations have blurred the boundaries between
drug promotion and health information. Relevant
health information should be: reliable: evidence based (listing data
sources), unbiased, and up-to-date, with full transparency on authorship and financing
(enabling rejection of information influenced by conflicts of interests);
comparative: presenting benefits and harms of the full range of available treatment
options (including, where appropriate, the option not to treat), together with
an explanation of the natural history of the disease,or condition; and
adapted to users: understandable, accessible, and culturally sensitive. Currently,
there are many sources of relevant health information for the public both in Europe
and internationally. There is room for improvement but to state that a "patient
information deprivation syndrome"exists in Europe is not true.Specific tools
have been developed to assess and rate the quality of health information. The
aim of these tools is to help both information providers and users to ensure accuracy,
quality and relevance to health care choices. This declaration includes many examples
of quality assessment tools and information sources provided by health authorities,
medical product agencies, healthcare assessment agencies, health care providers,
health professionals, consumers'organizations and independent patient groups. The
role of pharmaceutical companies is strictly limited because of their inherent
conflicts of interest. Recommendations on treatment choice must be independent
both of individual companies that have a product for sale, and the industry as
a whole.The statement by industry lobbyists that "Consumers and patients
are effectively excluded from receiving information about their medicine and its
comparative effects [because of the] ban [for] drug developers from informing
patients [
] even on the developers own web sites", makes no sense.
Pharmaceutical companies, and all "partners" financed by pharmaceutical
companies, cannot provide unbiased comparative information on available drug and
non-drug treatment alternatives. Pharmaceutical
companies do have a specific role to play: by law, they must provide well labelled
drugs, including patient information leaflets. Directive 2004/27/CE requires package
leaflet evaluation by patients.This is an important and much-needed step.
Informative packaging and patient information leaflets are likely to contribute
to better medication use and prevention of errors. Proposals
for improvement of European citizens access to relevant information include:
ensuring transparency of medical products agencies to guarantee full public access
to pre-market studies of drug safety and effectiveness, and pharmacovigilance
data; requiring pharmaceutical companies to fulfil their obligations
concerning packaging; developing and reinforcing sources of comparative,
unbiased information on treatment choices; optimising communication
between patients and health professionals; directly including patients
in reporting of side effects of drugs; putting an end to the confusion
of roles between p full implementation and enforcement of the European
regulation on drug promotion. ©Joint Declaration
of HAI Europe, ISDB,AIM, BEUC, Medicines in Europe Forum 3 October 2006 |