Editorials

Medicines information—leaving blind people behind?

BMJ 1997; 315 doi: https://doi.org/10.1136/bmj.315.7103.268 (Published 02 August 1997) Cite this as: BMJ 1997;315:268

Manufacturers should provide information in large print, braille, or audiotape

  1. D K Raynor, Heada,
  2. N Yerassimou, Campaign officerb
  1. a Division of Academic Pharmacy Practice, School of Healthcare Studies, University of Leeds, Leeds General Infirmary, Leeds LS2 9NS
  2. b Royal National Institute for the Blind, London W1N 6AA

    All new medicines in Britain must now come with a comprehensive manufacturer's leaflet inside the pack. Within two years all existing medicines will also include such a leaflet.1 This is the most important change for over a decade in the provision of information to patients. However, the claimed benefits from these leaflets will not be available to the 1.7 million people in Britain with impaired vision.2 Most visually impaired people are elderly,2 a group that is prescribed nearly half of all prescription drugs.3 Most live alone and have to rely on friends, families, or neighbours to read information for them. When this is medical information, the preference for privacy and confidentiality is obvious.

    If the move towards patient empowerment is to succeed, patients need information to guide their choices.4 The Royal National Institute for the Blind's “See it Right” campaign makes the point that visually impaired people have a right to equal access to information, including medical information.5 We live in an information age, and sighted people take for granted the array of information at their disposal that allows them to make informed choices about important matters. Blind and partially sighted people have effectively been excluded. A recent survey of over 500 randomly selected people with visual impairment showed that 67% found medical information difficult to get in an accessible format.6

    Extending the benefits of written information on health related issues requires a multifaceted approach. Blind and partially sighted people are not a homogeneous group. They are of all ages and backgrounds, with different eye conditions, and so need information presented in different ways. However, providing accessible information does not have to be complicated or time consuming. Advances in technology allow information to be produced rapidly in braille, large print, audiotape, and computer disk.

    Providing information with clear print will benefit all readers, but especially visually impaired people, 60% of whom consider themselves to be print readers. Using a simple typeface in large bold print with contrasting colours for text and background on good quality matt paper can make all the difference for someone with poor sight.5 Optical scanners can read and translate information onto computer if the text is reasonably clear. If the leaflet is also well designed and contains well written, jargon free text, this will benefit both sighted and visually impaired people.

    The advent of cheap tapes and tape recorders has revolutionised the way many blind and partially sighted people can use information. But it is not suitable for everyone: only a third actually own a tape recorder—although this number is rising—and one in three older people suffer impaired hearing, which limits more widespread use of tapes.

    Braille is most likely to be used by people with minimal remaining sight whose blindness occurred early in life. Although the number of people fluent in braille is quite small (only 19 000 in Britain), for many, notably deaf-blind people, it is their only means of communication. Many others know enough to be able to read braille labels. Braille can be produced using specialist computer software or by a simple hand held gun that produces braille on an adhesive strip.

    Telephone helplines can provide an immediate and relatively inexpensive means of communication,7 either one to one or via recorded information. Three quarters of blind and partially sighted people possess a telephone, but this still leaves a quarter who do not. Most blind and partially sighted people are on low incomes and so may be deterred by telephone charges. It is therefore good practice to offer telephone services on 0800 (free) or 0345 (local rate) numbers.

    For the foreseeable future, information leaflets in drug packs, produced by industry, will be the main route for providing medicines information to patients. Manufacturers need to recognise the needs of visually impaired patients and consider making the information available in large print, braille, or on tape. Visually impaired people should be able to quickly obtain the information in their preferred format without extra cost. One option is a telephone help line for requesting copies of alternative media or for providing information itself. Patients can be informed about the availability of such alternatives via their pharmacist, doctor, or nurse. In addition, these alternatives should be promoted through a mention in the standard leaflet (preferably in large print and braille). Similar “sign posting” could be used for other groups for whom leaflets present problems—for example, by using an agreed symbol for a helpline for people with reading difficulties, and a message in the relevant language indicating the availability of a foreign language leaflet.

    Access to information about a medical condition or treatment is a basic human right that visually impaired people have traditionally been denied. The introduction of universal drug information leaflets heralds a new era for patient empowerment that should not be denied to any patient group. Bank statements, telephone bills, and even best selling novels are now available in large print, braille, or audiotape. It is now time for medical information to follow suit.

    References

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