Doctors should be encouraged to develop information resources on the internet

EDITOR—Coulter's editorial on evidence based patient information presents a counsel of perfection for those who seek to provide information for their patients.1 Her call for a national public information strategy and for training for clinicians in how to use better materials sounds “maternalistic” and overprotective. She belittles the effort that health professionals have invested in providing such information, and the tenor of her editorial seems to be to discourage these attempts. She deplores the paternalism of “well intentioned” health professionals who provide the public with material of “infantile quality.”

Many patients choose to consult non-scientific sources of information about their conditions, including family members and alternative practitioners. Advice from such sources is likely to be far more dangerous than minor inaccuracies in information literature for patients. What is needed is not another nanny state initiative but one that encourages enthusiastic health professionals to get together and use their experience to deliver information more efficiently to their patients.

Coulter dismisses the benefits of the internet as a vehicle for patient information so cavalierly that I wonder if she has used it recently to obtain information about medical conditions. In my experience, the quality of information that patients have gleaned from the internet has, in general, been superior to that derived from newspaper articles. There is plenty of rubbish on the internet, but patients should be given some credit for being able to sort out the wheat from the chaff. People who use the internet are accustomed to accessing several sources of information on a particular subject and comparing the quality of information provided. As large health charities such as the Arthritis Foundation have come online with comprehensive and trustworthy information resources for patients, the professional design of their sites ensures that they will feature at the top of most search lists.

Rather than discourage enthusiastic health professionals, why not encourage them to work with their specialist societies in developing and maintaining comprehensive, accurate, and readable information and sharing it with the public on the internet. The specialist societies and charities can then concentrate on maintaining a catalogue of the disparate sources of health information on the internet, using a rating system for accuracy, reliability, readability, and level of detail. The information age is upon us, and we will serve our patients best if we seek to provide accessible, up to date, and well presented sources of information and advice rather than to restrict freedom.

Computers can be used to tailor information to patients

EDITOR—I fully support Coulter's call for better patient information, training for clinicians in how to use patient information materials, and an accreditation system to help judge quality.1 In a multicentre study, colleagues and I are investigating the learning needs and opportunities for clinicians at a time when increasing amounts of information, both good and bad, are available to patients.

Coulter is right to point to the difficulty of developing materials suitable for both patients with a low reading age and those with good comprehension wanting detailed information. Using questions from a previous study,2 we have recently found considerable differences in information needs between patients who read tabloid newspapers and those who read broadsheet ones.3 (Newspaper read was a better predictor of information need than living in a deprived or affluent area.)

One approach in meeting the needs of patients with different educational, cultural, demographic, and, not least, clinical backgrounds is to use computers to tailor the information to the patient. Tailored information can be presented on screen or on paper, and we can use a variety of techniques to try to make it more appropriate for the individual.4 For example, the geographical site, on line questionnaires, medical records, response times to prompts on the screen, and previous choices from menus can all be used by the computer to choose the most appropriate next screen, the vocabulary to be used, or the most appropriate presentation on paper of the materials available. This clearly does not remove the need for good quality evidence based materials for patients as argued by Coulter, but it does offer one way forward towards producing materials appropriate to the individual patient.

The preliminary results of our randomised trial comparing general with personalised information for 525patients receiving radiotherapy for cancer show some positive benefits of this approach,3 but few other studies examining the costs and benefits of the tailoring of information have been published. We need to know much more about patients' information needs and how they vary between different groups—not only to build new computer based methods of giving information but also to help in improving clinicians' communication skills. Another study we have just completed (paper in preparation), in which clinicians were interviewed about how they tailor information to the patient, found that tailoring was inconsistent between individual clinicians and did not necessarily match the patients' needs.

Local policies would be better than a national strategy

EDITOR—Information materials given to patients in the United Kingdom have rarely been evaluated in trials that could stand up to statistical examination. As large numbers of patients are exposed to potentially inappropriate advice, this is a major shortfall in our medical knowledge.

Coulter writes that “there is no substitute for researching patients' information needs and involving them in developing and testing materials.”1 Colleagues and I at Cambridge have linked in with the cancer unit at Bedford Hospital and are doing precisely this. Three strategies have been developed with patients who have cancer—use of an individualised personal organiser, a patient information video, and an internet gateway website. They are each being evaluated in prospective randomised trials.

The results of these trials will be made available through publication in the traditional way. Coulter suggests that a national strategy should be adopted, but I believe that it would be more appropriate for funding to be given to interested local groups that have developed a joint strategy and are able to publish their work. Information specific to local needs would then be developed, which might by adapted by other centres throughout the United Kingdom. Another barrier to success is that these strategies are being developed entirely from charitable donations with no government funding. The King's Fund is in an ideal position to coordinate and fund these local groups rather than develop its own national strategies. If this was to occur, information for patients in the United Kingdom would rapidly improve.

Differing standards of literacy are better catered for with computers

EDITOR—In producing its range of patient information booklets and leaflets, the Leukaemia Research Fund was mindful of the conflict between ensuring accessibility to people with limited literacy and the risk of failing to inform adequately those who require detailed information. Informal feedback suggests that there is a complementarity between our literature, which is sought out by those who wish for detailed information, and literature from other sources. This complementarity is serendipitous and is unlikely to exist for most other conditions.

A possible solution to this conflict would be increasing use of computer information facilities. The strength of an interactive format, as offered by web documents (possibly from a local server) or multimedia documents, is the ability of users to determine the level of detail and complexity they find acceptable and desirable. Suitable hypertext links can offer increasingly simplified explanations, and users can burrow down to the level appropriate for their age, background knowledge, and literacy.

A further benefit of this approach is that it could readily be modified to allow individual patients to see personalised patient information—a consultant could insert specific prognostic data for different groups or modify sections relating to treatment to eliminate reference to treatments that are not appropriate to that patient. With the increasing use of computers and regular upgrading, most district general hospitals could probably easily identify suitable redundant equipment capable of running a web browser or stand alone presentations, or both.

With the printed medium it is not possible to produce information that simultaneously is accessible to the functionally illiterate or semiliterate and satisfies the information needs of the highly literate. New ways of presenting information must be found to overcome this problem.