The Pharmaceutical Journal
Vol 278 No 7439 p181
17 February 2007

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Written information of little value, say patients

Patients believe the written medicines information they receive is of little value and fails to increase their knowledge, according to the results of research published this week. However, changes to the way information is now presented are likely to make it more useful.

Patients also think that the main purpose of statutory patient information leaflets (PILs) that accompany medicines is to highlight side effects rather than, as thought by some health professionals, to promote concordance.

Patients would prefer side effects to be listed in the order of the likelihood of them occurring, because they believe this would give a more accurate indication of probability, the researchers’ report reveals.

Some patients also questioned the credibility of PILs because they were written by the drug manufacturers.

Patients are keen to be given medicines information before any prescribing decision is taken but they do not want written information to replace a conversation with a health professional about the prescribing decision, the researchers discovered.

The findings come from a review of 70 quantitative and qualitative research papers on the role and effectiveness of written information available to patients about individual medicines. Researchers also sought advice from designers, patients and patient organisations who attended two workshops in the year-long study.

The research, conducted on behalf of the Department of Health’s NHS technology assessment programme, was carried out by a team led by Theo Raynor, professor of pharmacy practice at the school of health care at the University of Leeds.

He said: “Despite what we found there are reasons to be optimistic because since 2005 all leaflets for medicines in the EU have to be tested on patients first before the manufacturer can gain a licence. Although this was too late to have an impact on our study, that is bound to make a difference, and from the work we are doing at the moment, we can see that this is happening.”

The study concluded that there was a gap between “currently provided leaflets and information that patients would value and find more useful”.

Patients said it was important to them that they could easily understand the written information they were given and that the leaflets were well designed so they were easy to read.

The researchers said: “The challenge is to develop methods of provision flexible enough to allow uptake of varying amounts of information on a variety of aspects, depending on needs at different times in an illness.”

The way to achieve that, they recommend, is to involve patients more in the decisions around information leaflets, to design leaflets according to key principles so that the information is presented in a way that is easily and clearly understood, and to present risk information in numerical order.

But Professor Raynor pointed out there is also the need for more research that focuses on web-based patient information. He said: “We found hardly any research on how patients used and valued web-based information, which is becoming much more important as people increasingly go to the web for this kind of information.”