[Patient-held health records: impact on breast cancer follow-up in the Rhône-Alpes region. Project Archimed]

Abstract

Background: The conditions of use and access to medical records have become an important source of interest in the last decade. In this context, our main objective was to assess the impact of a paper patient-held records, shared with healthcare professionals.

Methods: In the particular case of breast cancer management, we identified the expectations of practitioners and patients. Secondly and according to a Delphi method, we defined the content and size of a medical record, which could be held by the patient. Following these preliminary studies, we conducted a randomized controlled trial, comparing patients with usual follow-up to others holding the new record containing essential information for coordination of care.

Results: The patient-held record favoured membership and satisfaction of both patients and health professionals. It was used as a communication tool between physicians and patients, but could also cause anxiety to some patients. Patient quality of life, data confidentiality and costs of care remained identical in the two arms. With its benefits for both patients and healthcare professionals, a new concept of medical records was revealed by this study.

Conclusion: New models for healthcare organization deeply modify the roles and relationships of all the actors in the healthcare system. Further research on patient-held records is needed to evaluate the full range of its benefits and limits.