Building a shared patient record for breast cancer management: a French Delphi study

Abstract

Before electronic records become operational, patient-held records provide an opportunity to improve communication between patients and healthcare professionals. Our aim was to design the appropriate organization, layout and content for such a shared record for breast cancer management, based on a consensus between the various stakeholders. We therefore conducted a Delphi study within a working group of 48 members, including patients, oncologists, general practitioners, nurses and other professionals. The procedure featured three rounds during which participants' judgements were collected via mailed questionnaires and quantitative and qualitative feedback was provided on a regular basis. These three rounds were followed by an evaluation phase. Forty members (83%) participated in the three rounds. According to the agreement reached, the shared record was expected to include a front summary card, four sections for groups of users authorized to write down or insert information in the record (patient, physicians, medical auxiliaries and other healthcare professionals), and one section for medical imaging files. In addition, the record was to include specific categories of information as subsections within each of the various user sections. The participant satisfaction rate was over 90% for all aspects of the procedure, with the exception of interaction within the working group (79%).