BMJ  2005;331:1034-1035 (5 November), doi:10.1136/bmj.331.7524.1034

Editorial

Information for patients on medicines

Should be much more accessible and patient centred

The traditional model for communicating with patients about their medicines is that doctors decide the best treatment and patients follow their doctors' instructions with only limited independent access to information about treatment. The Association of the British Pharmaceutical Industry (ABPI) is now reviewing its code of practice,¹ and this is an important opportunity to move to a more modern view of patients—as partners of health professionals and decision makers in relation to their health. The main aim of the code is to protect patients from potentially harmful influence. It currently focuses heavily on regulating the pharmaceutical industry's communications with health professionals and imposes highly restrictive conditions on direct communication with patients. This model is seriously flawed.

The ABPI code of practice should reflect the increasing role that patients are taking in decisions about their health and treatment, as well as patients' entitlement to access information from any source they choose. The code should require companies to provide better information for members of the public who seek it, rather than prevent them from doing so. It should focus on ensuring the objectivity, quality, and evidence base underpinning such information. The ABPI should police these standards rigorously.

Around half of all medicines are not taken as prescribed,² with serious consequences in terms of preventable ill health, mortality, and cost to the NHS. Non-compliance is almost always the result of conscious choices made by patients rather than forgetfulness.³ The best predictors of compliance are patients' attitudes, beliefs, and perceptions about their illness and treatment.⁴ These include whether patients perceive a medicine as necessary for maintaining health as well as concerns about possible adverse consequences such as unpleasant side effects, dependency, or long term harm. These beliefs are strongly influenced by the information that patients receive from health professionals and other sources.

In all demographic groups, most patients want to take at least some part in decisions about their treatment, and value having information about medicines from different sources.⁵ Information about the potential risks and benefits of different options for treatment must be available to patients and their families in accessible formats. The quality of the patient information leaflets that come with prescribed medicines is improving,⁶ but these leaflets are regulatory documents and as such will always be too narrow, too negative, and too late to meet all patients' information needs (Raynor DK, British pharmaceutical conference, Harrogate, September 2003). More user friendly information needs to be available before the decision to prescribe is made, to support the shared decision making that patients say they want.

Pharmaceutical companies should have a controlled but greater role in providing patients with factual, unbiased, and non-promotional information about the risks and benefits of their medicines, both in response to individual inquiries and more generally. The restrictions in the current ABPI code make companies wary of doing so. Companies feel that the rules governing information for patients are insufficiently clear about what they can and cannot do, and this hinders them from acting in patients' interests.

In response to individual inquiries, companies will usually refuse to give anything but the most basic information and will not, for example, provide patients with copies of research papers even when these are specifically requested. This is unduly restrictive, as is the requirement that information may be given only for medicines "prescribed for the enquirer." In our view, any member of the public is entitled to question a company about any of its products, whether or not the person has been prescribed the product. Companies should be allowed and, indeed, required to provide factual and unbiased answers to patients' questions and to document inquiries and responses for public examination in case later queries arise.

The Medicines Information Project has shown that the pharmaceutical industry can develop information for patients and the general public about medicines, under the direction of a multisector board that includes patients' organisations, health professionals, and the medicines regulator.⁷ This information covering all medicines prescribed in the United Kingdom is being produced in a form called Medicine Guides, starting with treatments for asthma and chronic obstructive airways disease.⁸

Feedback about the pilot guides showed that they help patients and their families. Designed and developed with both health professionals and patients and accessible online from anywhere in the world, these guides have advantages over mandatory patient information leaflets. They can be customised to provide only the information relevant to a specific indication; they discuss medicines in the context of all available alternatives, including non-drug options; and they link to relevant clinical information about conditions in NHS Direct Online. And because the guides are an online resource with open access, they can inform the dialogue between patients and health professionals when making treatment decisions.

(jshaw{at}medicines-partnership.org)
Medicines Partnership, London SE1 7JN

Medicines Partnership, London SE1 7JN

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Competing interests: Medicines Partnership is funded by the Department of Health and governed by a multidisciplinary task force including patients, health professionals, and the pharmaceutical industry. JS chairs Ask About Medicines Week (7-11 November 2005) and the Medicines Information Project Board, overseeing the development of Medicine Guides. JS is vice-chair of NHS Direct.

References

1. Association of the British Pharmaceutical Industry. Code of practice for the pharmaceutical industry. London: ABPI, 2003.
2. Haynes RB, McDonald H, Garg AX, Montague P. Interventions for helping patients to follow prescriptions for medications. Cochrane Database Syst Rev 2002;(2): CD000011.
3. McGavock H, Britten N, Weinman J. A review of the literature on drug adherence. London: Royal Pharmaceutical Society of Great Britain, 1996.
4. Horne R, Weinman J. Patients' beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosomatic Res 1999;47: 555-67.[CrossRef][ISI][Medline]
5. Medicines Partnership. Who decides? UK public perceptions of decisions about medicines. www.medicines-partnership.org/research-evidence/opinion-research/who-decides (accessed 26 Oct 2005).
6. Committee on Safety of Medicines Working Group on Patient Information. Always read the leaflet: getting the best information with every medicine. London: Stationery Office, 2005.
7. Medicines Partnership. Medicines information project. www.medicines-partnership.org/medicines-information/m-i-project (accessed 24 Oct 2005).
8. Medicines.org.uk. Welcome to medicine guides. http://medguides.medicines.org.uk (accessed 24 Oct 2005).

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