Jonathan Swift, meet Werner van den Gobbledygook

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  • 01/11/2008
For those of you watching EU policy on information to patients (“ITP” in EU parlance), there are two documents worth discussing.

The first is “Communication from the Commission to the European Parliament and the Council Concerning the Report on Current Practice with Regard to Provisions of Information to Patients on Medicinal Products’

(I know, it sounds like the title of a Jonathan Swift essay)

I quote directly:

“The provision of information on medicinal products requires taking into consideration the needs of patients in the context of healthcare provision.”

Once you get past all the banal bureaucratic gobbledygook, there’s some pretty interesting bureaucratic gobbledygook.

(Is there someone somewhere in a secret, secure location in Brussels named Werner van den Gobbledygook who edits all these EU documents?)

“Most sources available point to the increasingly active role of patients in this regard; patients have a right to be informed and in this context they should be able to access information about their health, medical conditions and the availability of treatments.”

A crucial point – but if the delivery of information is placed in the hands of governments (aka "payors") – will “availability of treatments” be defined as “what will be reimbursed” or will the full panoply of options be presented to newly empowered European patients? This is not just a finesse question, but rather hits at the heart of the matter. He who controls the access to knowledge controls the knowledge.

“Patients are no longer simply taking what is prescribed for them, but are increasingly involved as manager of their health. They become intensely involved with their illness, show great interest in health issues and have a constantly growing need for information.”

This is an elliptical way of saying that, when patients learn that they are being denied treatment because of cost-based vs. patient-centric government care schemes, they get upset – very upset.

And finally, “Recent evidence indicates that patients are however often unsuccessful in playing a larger role in their health decisions.”

Even though government health care limits, by definition, many health care options, the lack of information adds to that dilemma. According to the report, “Although there is insufficient evidence published, an increase in the quality and appropriateness of information available to patients would be expected to contribute to achieve better health conditions and also to contribute to a more efficient use of resources. Better informed patients are expected to adhere better to treatments and to better understand clinical decisions. This should lead in the long term to social and economic benefits.”

That’s right. And, once you plod your way through all the conditional phrasing, the report is saying that more information results in better outcomes which reduces costs. Amen. But when they say there is “insufficient evidence,” what they’re really saying is that there’s actually a lot of solid research – except that it pertains to the positive benefits of direct to consumer advertising. But at least they’ve embraced the concept that more information is better.

Unfortunately the report also calls for the EU to “keep the ban on direct to consumer advertising on prescription-only medicines.” (For more on this point, please see “Will Brussels DTC the Light?" at But that's another issue for another time.

Towards the end of the report, this refreshingly honest statement:

“Member States authorities may not be in a position to fully address patients’ needs in terms of the substance of information and the access via different means. In turn, the pharmaceutical industry possesses the key information on their medicines but this information can currently not be made available to patients and healthcare professionals throughout the EU.”

So much for Health Action International (HAI) who claims, “There is no health information gap in Europe.”

And then there’s the companion document, “Commission Staff Working Document: Background information supportive to the Communication from the Commission to the European Parliament and the Council concerning the Report on Current Practice with Regard to Provision of Information to Patients on Medicinal Products, in the form of different annexes”

(Indeed, the titles just keep getting sexier, pithier, and more lyrical).

Again, I quote directly:

“Pharmaceutical companies possess key information about their products which only in part (through leaflets and labels) is made available to the public. Consequently, 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 and to help reduce the current information gap, provided that there will be adequate rules to ensure reliability, objectivity, and quality of information.”

And, “Like many patient organizations most pharmaceutical companies argue that information should be of high quality and not be judged by its source. These companies want to be able to produce non-promotional information for patients about their own medicines and diseases and make it public.”

EU Commission recognition that the pharmaceutical industry can be a valuable partner in the broader dissemination of timely and accurate health care information is an important step in the right direction.

And it’s about time because, as Julian Morris of the London-based International Policy Network quipped, “Europe is running out of failed alternatives.”

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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