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We welcome the series of articles on rare pulmonary disorders which started in the March 1999 issue ofThorax. In the introduction to the series Tattersfield and Du Bois1 describe the frustrations felt by patients unable to obtain information about their rare pulmonary condition from clinicians with little or no experience of that disorder. The isolation of such patients is emphasised when they are unable to share their experiences with others diagnosed with the same disorder. Whilst we appreciate that this is true for many patients, we would draw attention to the massive range of information on rare pulmonary disorders available to both patients and doctors via the Internet. There are over three million UK subscribers to the Internet currently and, with the advent of digital television, this number will rise exponentially over the next few years. The problem then facing the patient (and clinician) is too much information. For example, lymphangioleiomyomatosis, the subject of the first article in the series, has over 500 Internet sites accessible worldwide to patients. We hope to provide assistance to patients who may lack confidence in knowing where to turn for information relevant to their needs.
The North East Thames Training Programme for Specialist Registrars has run an Internet based educational programme for medical trainees for over two years. Using this experience, trainees and trainers are now opening a website for patients with rare pulmonary disorders. The group is evaluating existing websites for validity of medical information and the relevance of presentation and content for patient rather than medical needs. It is hoped that the resulting reference site will index all available Internet information and allow patients to access information that is both reliable and relevant. To achieve this goal we are working with the help of patient support groups based with the British Lung Foundation, Organising Medical Networked Information (OMNI), and the Oxford University and British Library health care information team.
This is an enormous project which we feel will have increasing importance with time. We have already received offers of help from registrars in Wales, Scotland, and Australia. The North East Thames registrars welcome offers of co-operation from other similar groups.
authors' reply We agree with Dr Roberts that the Internet raises special issues for patients with rare diseases and that the problem is often too much information rather than too little. With respect to lymphangioleiomyomatosis (LAM), our approach in Nottingham has been to produce a four page fact sheet for patients which we have given to patients in the LAM Trust and to some of the doctors looking after the patients. The fact sheet was piloted amongst a few patients with LAM and modified in the light of the feedback we received. Several patients have obtained the fact sheet from the LAM Foundation in the USA which goes into slightly more detail than our document, particularly with respect to prognosis; as might be expected, some patients appreciate the further information whilst others do not.
Whether specialist registrar trainees should be deciding what patients with a rare disease should be encouraged to read is more debatable since some will never have met a patient with the disease in question. It seems more appropriate to us for fact sheets and information to be provided by people with some knowledge and expertise of managing patients with the particular disease, in conjunction with the patients themselves. The British Thoracic Society is planning to develop an orphan disease register and to encourage research into rare disorders. One of their remits will be to consider what information is required and how it should be presented and piloted.
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