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The pharmaceutical industry has the potential to be an important source
of information to respond to the growing demand for more and better information
by patients. This is the spirit of a European Commission consultation
document “Current practice with regard to provision of information
to patients on medicinal products”.
Ostensibly the document sets out how the public is currently accessing
information about medicines in different European member states and the
role the internet plays.
However it is produced by the EC’s Directorate-General for Enterprise
and Industry — which looks after the interests of the business
world — rather than by the Directorate-General for Health and Consumer
Protection, known as DG SANCO. So some stakeholders, consumer groups
in particular, are questioning the agenda of such a report.
“Patients have become more empowered and proactive users of healthcare,
increasingly seeking information about their illnesses and treatment
options including medicines from an ever growing and diverse range of
sources,” the document says. It argues that pharmaceutical companies
want to be able to produce non-promotional information for patients about
diseases and their own medicines, and make this information available
to the public.
Consumer response
Consumer organisation Which? points out that the EC report does not
consider the information needs of consumers, how these needs are currently
being
met and where improvements are needed. “Instead,” the group
says in its response to the report, “we are repeatedly told that
industry may have information that legislation prevents them from giving
to patients, and that this may contribute to better health if it was
made available, despite the fact there is ‘insufficient’ evidence
to support this assertion.”
Don Redding, head of policy and communications at the Picker Institute
(a charity that champions patient choice in health care), says that the
development of education materials for patients through so-called public-private
partnerships needs to involve a wide range of interested parties. He
also questions the current lack of engagement from DG SANCO.
In its response to the EC report, the Picker Institute calls into question “the
report’s assumption that the answer to patients’ information
needs lies with industry, and its conclusion that the pharmaceutical
industry should be allowed a greater role in the provision of information
to patients”.
Mr Redding elaborates: “We [the Picker Institute] do not have our
own evidence on the degree to which patients find pharmaceutical industry
information reliable. But consumer groups will say that the evidence
shows patients do not find that information reliable.”
The Pharmaceutical Forum
The EC document also highlights the work of the high level Pharmaceutical
Forum, set up by the EC two years ago to look at challenges faced by
the industry. Its working group on information to patients — which
recently reported to the Pharmaceutical Forum’s annual meeting
in Brussels — has the objective to “develop proposals for
improving the quality and accessibility of information to patients
on medicines and health issues”.
However, the working group’s contributions to the issue are under
attack. The European Public Health Alliance believes that the Pharmaceutical
Forum cannot be considered a legitimate body as it lacks transparency,
and is not representative of the breadth of organisations working on
information to patients. It notes that membership of the forum is mostly
held by the industry, with the involvement of only one patient group.
Academic and research institutions, consumer groups and public health
organisations are absent.
Which? is concerned that the needs of consumers will not be met from
the work of the Pharmaceutical Forum because of the lack of any consumer
representation on it. “When this exclusion is considered alongside
the over-representation of pharmaceutical industry interests on the steering
group of the forum, it calls into question the aims and objectives for
the forum’s work in this area,” Which? adds.
In an open letter to members of the European Parliament and the media,
the Medicines in Europe Forum, Health Action International and the International
Society of Drug Bulletins say that the EC report’s conclusions “are
exclusively biased in favour of allowing drug companies to communicate
directly with the public”, which, they say, undermines the EC’s
credibility.
“Comparative information, which is indeed crucial for informed decisions,
cannot be provided by pharmaceutical companies because of inherent conflicts
of interest,” the letter states. “What company could possibly
recommend a competitor’s product over its own, or recommend discontinuing
treatment with its own product?”
Information or advertising?
Changes addressing improved access and readability of product-related
information, as well as measures for greater transparency, have been
incorporated into legislation from 2001. However, the DG Enterprise and
Industry document states: “More far reaching mechanisms to improve
and harmonise the access of patients to information have been rejected
in the legislative process with reference to the bureaucratic burden
caused by enforcement mechanisms and the lack of a clear distinction
between advertisement and information.”
It seems unsurprising that many believe the Pharmaceutical Forum, with
backing from DG Enterprise and Industry, is driven towards a lift on
consumer advertising of pharmaceuticals.
The Royal Pharmaceutical Society acknowledges this link in its own response
to the EC report: “The Society makes a distinction between advertising
and information on medicines,” it says. “The demand for information
about prescribed medicines from patients and the public is likely to
increase, but [direct-to-consumer advertising] is unlikely to be the
best way of providing it because the aim of advertising is to persuade,
not to give balanced information about benefits and risks.”
The Society also says that lifting the ban on direct-to-consumer advertising
could adversely affect doctor-patient relationships, distort public health
priorities and disrupt cost controls operated by the NHS.
Mr Redding adds: “We [at the Picker Institute] restate to the EC
our opposition to any relaxation in the rules on direct-to-consumer advertising
of prescription pharmaceutical products.” He
questions what the current EC action does to add value, suggesting that
the EC could be supporting the types of information that enable patients
to be in a better position to make choices.
“A good decision aid,” he explains, “will provide information
about all the available treatment options, their benefits and harms,
the unknowns. This will aim not just to convey that information, but
to encourage the patient to consider their own position, values and preferences,
and for them to make judgements about what treatment options might be
appropriate for them.” |
The
Pharmaceutical Journal