Addressing the Question of Medical Data Ownership

By Kurt Yaeger, M.D., Department of Neurological Surgery, Mount Sinai Icahn School of Medicine (Guest Writer)

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.

MEDICAL DATA, WHEN AMASSED ON A POPULATION SCALE, HAS THE POTENTIAL NOT ONLY TO INFLUENCE THE FUTURE OF THE INDIVIDUAL PATIENT, BUT THE ENTIRE HEALTHCARE SYSTEM AT LARGE.

With blockchain-based health data storage comes the solution to many of these problems. First, medical data becomes intrinsically linked to the individual patient, to be shared as he or she sees fit. Elements of the patient’s medical history can be shared, donated, or sold to an academic institution, a pharmaceutical company, or to the government for research purposes. With patients as stewards of their own data, they can become more empowered self-advocates, and overall strive for better individual care.

Second, with global participation on a population-based scale, participating in a blockchain health data share would facilitate the acquisition of big medical data. Using the BurstIQ platform, research institutions can query the blockchain for specific health data parameters, and request access from individual patients. This drastically simplifies the enrollment and consent process that researchers typically must complete for a large volume clinical trial. In this setting, patients still retain control over their personal data sharing, while the research benefits from a large, cumulative dataset.

Lastly, with patients deciding who can access their blockchain-based medical information, data security in enhanced. Traditionally, a patient’s medical data can be shared between physicians, institutions, and insurers, without explicit permission from the patient. Therefore, even with storage on a secure EMR network, the patient’s medical record is subject to security breeches. Leveraging a blockchain platform, the patient explicitly decides who receives his or her confidential medical information, drastically limiting unauthorized access.

WITH THE APPLICATION OF BLOCKCHAIN TECHNOLOGY, THE HEALTHCARE SECTOR IS EXPERIENCING A PARADIGM SHIFT TOWARDS MORE PATIENT-CENTRIC CARE.

The question of medical data ownership has huge implications in clinical medicine. Historically, complex and insecure data sharing has limited the acquisition of large datasets by medical researchers. Institutions have been reluctant to share data with other institutions, driven by both scientific and financial competition. On an individual level, patients have often been physically and psychologically removed from their medical data. They know that they had blood tested, but they often do not understand why, or what the results indicate. With a blockchain-based data system, ownership over medical data is clarified, with the individual as steward over his or her personal information. Overall, patients benefit from enhanced self-advocacy, and population healthcare improves from large-scale research. With the application of blockchain technology, the healthcare sector is experiencing a paradigm shift towards more patient-centric care, with broad implications throughout clinical medicine, academic research, and industrial development.

Kurt is currently a resident physician in the Department of Neurological Surgery at the Mount Sinai Hospital in New York, NY. Prior to residency, he graduated from Georgetown University School of Medicine in Washington, DC. His research interests include quality improvement, healthcare cost-efficacy, and value-based care, as well as implementing blockchain technology in clinical practice.