A new approach to developing and designing information for patients has been hailed as a flagship study, Dr Tony Stevens told the 3rd European Breast Cancer Conference in Barcelona today (Wednesday 20 March).
Dr. Stevens, a Research Associate with the Sheffield Palliative Care Studies Group at Sheffield University, said he and his team had decided to involve patients right from the beginning in the production of an information booklet about medical research and clinical trials.
He said: Traditionally, patient information has been designed by professionals, but we put consumers at the forefront of this study and they had control over the format and content of the final document. Representatives from five breast cancer support groups in the North Trent region of northern England joined breast care nurses and other primary and secondary health care professionals to review the basic outline of the information proposed for the booklet, then the professionals were asked to refine the information and finally the consumer groups reviewed the revised information. At each stage they were asked to comment upon the design, content and potential usefulness of the information.
The resulting booklet is easy to read (it has a reading age of 12 years), is aimed at both patients and carers, is not specific to any disease, meaning that it can be used in a variety of situations, and it conforms to the UK National Health Service Guidelines on patient information.
The booklet is being distributed in four breast units in northern England as part of a randomized trial to see whether it has any effect on the numbers of patients who join clinical trials and how they decide whether to participate or not. Many patients have a limited knowledge about the process of research and may decide not to enter clinical trials because they are unsure of what is involved.
Dr. Stevens said: Feedback from recipients has been very positive, including unsolicited
Contact: Emma Mason
Federation of European Cancer Societies