Research Letters

Randomised cross-over study of patient-held records in oncology and palliative care

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.

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.

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.

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.

Les conditions d’utilisation et d’accès au dossier du patient ont profondément évolué ces dernières années et placent le dossier au centre de nombreuses préoccupations. Dans ce contexte, nous avons souhaité évaluer l’impact médical et systémique d’un dossier de santé papier, géré par le patient, partagé avec les différents professionnels de santé qui le prennent en charge.

Dans le cas particulier de la prise en charge du cancer du sein, nous avons identifié dans un premier temps les attentes des acteurs et défini, selon la méthode de consensus Delphi, un dossier en termes de contenu et de format, qui pourrait être confié à la patiente. La synthèse de ces travaux a permis de réaliser un essai contrôlé randomisé multicentrique comparant un groupe de patientes bénéficiant de la prise en charge habituelle, à un groupe équipé du dossier expérimental contenant les informations essentielles à son suivi.

Le dossier élaboré est source d’adhésion et de satisfaction de la part des patientes et des médecins. Il a représenté un outil de communication entre patientes et médecins, et entre professionnels, mais a pu générer de l’anxiété chez certaines patientes. La qualité de vie, la confidentialité des données et la consommation de soins sont restées identiques dans les deux groupes. L’étude objective un nouveau format de dossier, utile à la fois pour les patients et les professionnels de santé.

Les nouveaux modèles d’organisation des soins qui se dessinent, modifient profondément les rôles et les relations de tous les acteurs du système de santé. Dans ce cadre, la recherche sur le dossier détenu par le patient doit nécessairement être poursuivie afin d’en évaluer plus largement les bénéfices et les limites.

Allowing cancer patients to hold medical records containing essential information for managing their disease may improve their satisfaction and the coordination of their medical care.

Our aim was to determine breast cancer patients’ interest in and expectations of such medical records and the exchange of information during their treatment.

Eighty-six hospital physicians were selected to distribute an anonymous questionnaire to all of the breast cancer patients they saw in consultations.

Out of 194 patients asked, 140 (72%) participated in the survey. Forty-eight percent were “highly satisfied”, 47% were “quite satisfied” with their involvement in their treatment and 43% preferred to play a relatively passive role in decisions concerning treatments. When offered, 79% agreed to hold paper medical records containing test results, reports and letters. Many found these medical records to be useful and a possible means for improving communication. Others, however, expressed reservations concerning privacy or losing or forgetting the records.

The principle of shared medical records could satisfy the majority of breast cancer patients. Experimenting with this concept in the field would enable practitioners to better determine the content of the records and how they can be used on a practical basis.

There are constraints embedded in medical record structure that limit use by patients in self-directed disease management. Through systematic review of the literature from a critical perspective, four characteristics that either enhance or mitigate the influence of medical record structure on patient utilization of an electronic patient record (EPR) system have been identified: environmental pressures, physician centeredness, collaborative organizational culture, and patient centeredness. An evaluation framework is proposed for use when considering adaptation of existing EPR systems for online patient access. Exemplars of patient-accessible EPR systems from the literature are evaluated utilizing the framework. From this study, it appears that traditional information system research and development methods may not wholly capture many pertinent social issues that arise when expanding access of EPR systems to patients. Critically rooted methods such as action research can directly inform development strategies so that these systems may positively influence health outcomes.