9 Patient-controlled sharing of medical imaging data

Abstract

Sharing medical imaging data is currently carried out in two basic modes:(1) healthcare facilities form an organization-level sharing network (e.g. a Health Information Exchange) so that providers within the network can retrieve a patient's imaging data from other facilities as needed; (2) and for healthcare facilities that do not belong to a common sharing network, the patients must manually retrieve imaging data from one facility and transport them to another facility. The first mode poses patient privacy concerns, especially as the sharing network grows. The second mode places a significant burden on both patients and providers. This chapter reviews image sharing and patient control 's needs, gaps and challenges. It then analyzes a number of solutions that have been proposed to address image-sharing needs in different scenarios. Finally, it describes an image-sharing framework that involves patients as an integral part of, and with full control of, the image-sharing process. Central to this framework is the Patient Controlled Access-key REgistry (PCARE), which manages the access keys issued by image source facilities that uniquely identify patients' imaging data. When digitally signed by patients, the access keys can be used by any requesting facility to retrieve the associated imaging data from the source facility. This approach allows patients to control the image-sharing process with a minimal burden. It enables healthcare facilities to exchange imaging data with direct consent from patients in a manner that protects privacy and confidentiality. At the same time, it also affords healthcare facilities maximal control over the image sharing process; minimizing liability concerns as well as burden on the IT infrastructure and network bandwidth utilization.