Addressing the Question of Medical Data Ownership

During any medical interaction between patient and provider, essential health care information is documented and stored for future use. Typically, within a medical institution, this data is stored on proprietary electronic medical record (EMR) software, and includes demographic, medical, and financial information. A critical understanding of one individual patient’s data is essential making the correct diagnosis, providing the indicated treatment, and preparing the patient for the future. But this data, when amassed on a population scale (using big-data and machine learning analytics), has the potential not only to influence the future of the individual patient, but the entire healthcare system at large. By providing researchers with massive amounts of de-identified medical data, conclusions from prospective clinical trials can be more significant, and patterns emerging from retrospective cohort analyses may be more evident.

The use of individual patient medical data is therefore quite valuable when accumulated on a population scale. Given this inherent value, a fundamental question of medical data ownership arises. Does it belong to the patient to whom the data refers; to the physician who recorded and interpreted the medical information; to the hospital that employs the provider; or to the proprietary EMR software on which the data is stored? The concept of medical data ownership has never been obvious, with some using the term “stewardship” rather than “ownership” to better describe the complex relationship between various stakeholders. While it is stored on institutional EMR software, medical data can only be accessed by providers, researchers, and patients with direct access to the network, limiting large population-based studies. Furthermore, with remote data-sharing historically cumbersome and insecure, these studies have been infrequently performed due to high cost and impracticality.