Enhancing Privacy Controls for Patients via a Selective Authentic Electronic Health Record Exchange Service: Qualitative Study of Perspectives by Medical Professionals and Patients

BACKGROUND: Patients’ privacy is regarded as essential for the patient-doctor relationship. One example of a privacy-enhancing technology for user-controlled data minimization on content level is a redactable signature. It enables users to redact personal information from signed documents while preserving the validity of the signature, and thus the authenticity of the document. In this study, we present end users’ evaluations of a Cloud-based selective authentic electronic health record (EHR) exchange service (SAE-service) in an electronic health use case. In the use case scenario, patients were given control to redact specified information fields in their EHR, which were signed by their doctors with a redactable signature and transferred to them into a Cloud platform. They can then selectively disclose the remaining information in the EHR, which still bears the valid digital signature, to third parties of their choice. OBJECTIVE: This study aimed to explore the perceptions, attitudes, and mental models concerning the SAE-service of 2 user roles: signers (medical professionals) and redactors (patients with different technical knowledge) in Germany and Sweden. Another objective was to elicit usability requirements for this service based on the analysis of our investigation. METHODS: We chose empirical qualitative methods to address our research objective. Designs of mock-ups for the service were used as part of our user-centered design approach in our studies with test participants from Germany and Sweden. A total of 13 individual walk-throughs or interviews were conducted with medical staff to investigate the EHR signers’ perspectives. Moreover, 5 group walk-throughs in focus groups sessions with (N=32) prospective patients with different technical knowledge to investigate redactor’s perspective of EHR data redaction control were used. RESULTS: We found that our study participants had correct mental models with regard to the redaction process. Users with some technical models lacked trust in the validity of the doctor’s signature on the redacted documents. Main results to be considered are the requirements concerning the accountability of the patients’ redactions and the design of redaction templates for guidance and control. CONCLUSIONS: For the SAE-service to be means for enhancing patient control and privacy, the diverse usability and trust factors of different user groups should be considered.