Research investigates written information for patients

New research published by the NIHR Health Technology Assessment (HTA) programme suggests that most patients do not value the written information provided with prescribed or purchased medicines and feel it doesn't meet their needs. It recommends that patients need information that is tailored to them, set in the context of their illness and containing information on both the benefits of the medicine and any side effects. The researchers also suggest that people who take medicines should be involved in the development of such information, to make sure it meets their needs.

Led by Professor DK Theo Raynor of the University of Leeds, the research team conducted a systematic review of evidence about the role and effectiveness of information provided to patients about individual medicines. They assessed how patients and professionals value such information, the role it plays in using medicines, and compared the effectiveness of different ways of presenting the information, as well as gathering the opinions of experts in the field. 

The researchers found that while some professionals believe that the primary purpose of written information is to increase patients'
compliance with instructions for taking a medicine, patients disagree, using the information to help them decide whether or not to take a medicine in the first place, as well as informing them about ongoing medicine management decisions.

The way side effect risk is described has an important impact on the understanding of the likelihood of side-effects. Readability of information, in terms of language and visual presentation, is also very important to patients.

"Our research shows that written information needs to be consistent with spoken information from health professionals and flexible enough to meet the needs of different patients at different times. To achieve this, we need patient input into what the information says and how it is laid out," says Professor Raynor. "The findings have been presented to the Commission on Human Medicines' (CHM's) Expert Advisory Group on Patient Information and will be used to help to develop the future development of medicines information."

"By July 2008, pharmaceutical companies must have taken into account the views of patients for all existing medicines' leaflets," says Joanne Rule, chair of the Expert Advisory Group on Patient Information.
"Leaflets approved by the Medicines and Healthcare products Regulatory Agency have already begun to include changes highlighted in this excellent report.  Our challenge is to let patients know that the leaflets are changing so that they use them and to persuade health professionals to talk about the risks and benefits of medicines."


The research is published in full in the Health Technology Assessment journal series Vol 11.5. To download the report visit http://www.hta.ac.uk/project.asp?PjtId=1404

Ends

Notes to editors:

  1. The HTA programme produces high quality research information about the effectiveness, costs, and broader impact of health technologies for those who use, manage and provide care in the NHS. This is a programme of the National Institute for Health Research (www.nihr.ac.uk) and is the largest and longest running of the national programmes with 360 projects published since its inception in 1993. About 50 are published each year, all available for download free of charge from the website. It is coordinated by the National Coordinating Centre for Health Technology Assessment (NCCHTA), based at the University of Southampton. Visit www.hta.ac.uk for more information.
  2. The Commission on Human Medicine's Expert Advisory Group on Patient Information (PIEAG) was established in 2006 to look at how the MHRA involves patients in issues about medicines safety.  As well as looking at further ways to improve statutory patient information leaflets (PILs), the group offers advice on how the MHRA communicates to patients about the medicines' risk/benefit debate.  For more information
    visit: www.mhra.gov.uk

 Further information:

Ruth Allen, Communications Manager, NCCHTA, Tel. 02380 595584, email ruth.allen@soton.ac.uk Naomi Stockley, Assistant Communications Manager, NCCHTA Tel. 02380 595646, email ns5@soton.ac.uk

Naomi Stockley, Assistant Communications Manager
National Coordinating Centre for Health Technology Assessment (NCCHTA) Wessex Institute for Health Research & Development (WIHRD) Mailpoint 728, University of Southampton, Boldrewood, Southampton SO16 7PX
Tel: 023 8059 5646
Email: ns5@soton.ac.uk

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