A patient-held record for cancer patients from diagnosis onwards.

This article presents the findings of a qualitative study looking at the content and use of a personally held record for cancer patients. The study was conducted in the York area of the UK over a 1-year period and the record was introduced to patients as near to diagnosis as possible. The record had three main sections: general information, communication sheets and a health diary. Users were invited to complete questionnaires and volunteer patients took part in independently facilitated focus group discussions. Patients liked the record and placed importance on access to information early in their treatment process. They valued the health diary as a means of therapy and personal reflection and shared information in the records with family and friends. The steering group coordinating the study believed there was sufficient positive feedback to warrant further work. However, the findings of regional and national working groups must be assessed before progressing to the next stage of development.