It’s Time for Patients to Own Their Health Care Data | Opinion

Health care data exists in many forms, from medical records held in health care facilities to information captured through daily routines and lifestyle choices. This includes vital signs, medication details, allergies, medical histories, physician notes, and other critical data points that provide a comprehensive picture of an individual’s health.
However, amid this richness of data, there is a fragmented infrastructure of health care records. Patient information is scattered across various systems, making it challenging to access a unified view of their health history. This is particularly complicated because patients don’t own any of this data; it belongs to their health care providers, some of which are capitalizing on it.
We’ve entered an era where major U.S. health systems are peddling patients’ de-identified data for profit, sidelining the patients themselves. These data repositories include intimate details about patient care, ranging from disease diagnoses to digital heartbeats, which companies harness to train artificial intelligence (AI) systems to detect various health issues. Is this the path we wish to tread for the future of health care?
According to the World Economic Forum, hospitals generate around 50 petabytes of data annually, including clinical notes, lab tests, medical images, sensor readings, genomics, and operational and financial data. Shockingly, 97 percent of this data currently goes unused. The disparate nature of data ownership in modern health care poses challenges but presents opportunities to transform patient experiences and drive innovation.
The Vision for Patient-Controlled Data
Imagine a health care setting where every person controls their health data, allowing health care decisions to be driven by deeply personalized information and treatments finely tuned to each patient’s unique needs.
Currently, hospital systems and providers predominantly control patient data. This centralized control presents significant challenges for patients seeking to access, share, and manage their health information. When patients move or change health care providers, they often encounter difficulties transferring their data, leading to incomplete medical records. This hinders continuity of care and can result in suboptimal treatment.
When patients own their data, they can choose who to share it with—whether it’s a new physician, a research study, or a health care tech company seeking diverse patient data to train its AI algorithms. Allowing patients to own their data is necessary, as it empowers a thorough understanding of individual needs and builds the foundation for personalized health care.
Consider a recent development that illustrates a shift toward patient empowerment. A major provider of electronic health record software, Epic, announced a feature that would allow patients to share their health data with the apps of their choosing. This update, driven by new federal policies, is part of a larger movement in the health care industry to enhance data-sharing on a broad scale.
National Database Efforts to Incentivize and Monetize Sharing Patient Data
A national database that incentivizes and monetizes the sharing of patient data could help solve the patient data ownership puzzle. This database could serve as a centralized repository where patients willingly contribute their data in exchange for financial incentives or benefits such as personalized health insights and recommendations. This would encourage more widespread data sharing, leading to richer datasets that can drive advancements in medical research and personalized health care.
By creating a system where patients are incentivized to share their data, we can create a more collaborative environment between patients, health care providers, and researchers. This approach not only respects patient autonomy but also recognizes the value of their data in improving health care outcomes.
The Ambiguity of Patient Data Ownership
One of the fundamental issues surrounding patient data is the lack of clarity regarding ownership. Insurers, hospitals, and other health care entities often claim ownership of patient data, leading to a tug-of-war over who truly controls it.
Insurers may argue that they own the data because they process and analyze it for underwriting and risk assessment purposes. Hospitals and health care providers might claim ownership because they generate and store the data through medical treatments and services. However, this perspective overlooks the patient’s inherent rights to their health information. Patients should have the ultimate authority over their data, with the power to decide how it is used, shared, and monetized.
Data Security and Regulatory Frameworks
Policy initiatives and regulatory frameworks that promote patient agency in data ownership are an important piece of this movement. Implementing data portability and interoperability standards can help break down the barriers between different health care systems and providers, making it easier for patients to move their data as needed. These policies can ensure that patients have consistent and reliable access to their health information, regardless of where they receive care.
Advancements in technology, such as blockchain, secure data platforms, and AI-driven analytics, can support a movement to enable patient data ownership. These technologies can ensure the security and privacy of patient data while encouraging access and sharing. For example, blockchain technology can create immutable and transparent records of patient data, ensuring that patients retain control over who accesses their information.
Making Patient Health Care Data Ownership a Reality
Patients aspire to have increasingly greater control over their health care, from centralized information management to decision-making on data access and sharing. Empowering patients can lead to more personalized, effective, and coordinated care. Achieving this will require collaborative efforts from health care stakeholders, policymakers, and technology providers to cultivate a patient-centric approach to data ownership.
We need a health care system where privacy, progress, and ethics can co-exist. The future of health care hinges on granting patients greater control and transparency in managing their health data, which will ultimately lead to improved health care delivery and outcomes. We can create a more responsive, efficient, and patient-centered health care system by embracing patient data ownership.
Dr. Samuel Browd is the co-founder and chief medical officer at Proprio, professor of neurological surgery at the University of Washington, and board-certified attending neurosurgeon at Seattle Children’s Hospital, Harborview Medical Center and the University of Washington (UW) Medical Center.
The views expressed in this article are the writer’s own.