Data ownership should drive the future of AI in health care

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As artificial intelligence (AI) continues to reshape nearly every industry, health care remains one of the sectors with the most to gain and the most at risk of falling short. The challenge isn’t the quality of our algorithms or a lack of technical expertise; it’s the broken relationship between patients and their data as AI continues to permeate health care systems.

At the core of this issue lies a simple but often overlooked principle: Patients should control their own health data (and no, at the moment they don’t).

There’s a growing tendency in health policy and health tech circles to avoid the term “data ownership,” as it’s seen as legally murky or philosophically outdated. Instead, we hear about data “stewardship” or “responsibility.” However, these softer terms obscure the real issue, which is that patients have very little say in how their health data are used, shared or even retrieved.

Mika Newton
_{© xCures}

Yes, patients technically have the right to access their own records under the Health Insurance Portability and Accountability Act (HIPAA). But in the real world, those rights are often meaningless, as records are slow to be released; they arrive in hard-to-read PDFs or incompatible formats; and, in some cases, they’re withheld entirely due to administrative friction or outdated systems.

This can turn an inconvenience into a systemic failure that keeps health care stagnant and AI underpowered.

The system is compliant, but not functional

Federal initiatives like the 21st Century Cures Act and the Trusted Exchange Framework and Common Agreement were designed to improve health data interoperability and empower patients. But these efforts have been hindered by slow implementation, technical complexity and a lack of accountability. Industry standards for structured data exchange are live, but only for a specific subset of data categories.

Hospitals and electronic medical record vendors technically comply with existing regulations in general, but in practice, patients often still face obstacles. Portals can be difficult to navigate, access can be delayed, and records are sometimes provided in formats that aren’t easily shared with other providers or platforms. At the same time, innovative solutions like Individual Access Services, which are designed to let patients easily access and direct their data, have seen slower adoption. This is less a matter of technical feasibility and more a reflection of the broader challenges that come with adapting complex, established systems to new models of data exchange.

Simply put, this sort of disjointedness is dangerous. And in urgent or complex medical situations, delays in access to comprehensive records can have serious consequences.

Why ownership enables innovation

If we want to unlock the potential of AI in health care to personalize treatments, predict disease progression or match patients to trials in real time, we need access to complete, high-quality data. The only way to reliably get those data flowing is to put patients in control.

When patients have true ownership and possess clear rights to access, portability and consent, they become the gateway to better care and smarter systems. They can authorize new tools, share data across providers, and participate in research and innovation in ways that are transparent and informed.

In the same way we expect to access our bank accounts, travel records or financial history through a few taps on our phones, patients should be able to manage and share their health records just as easily.

A practical vision for what comes next

To build a health care system that truly serves patients and enables meaningful AI innovation, we need to rethink how data move and who controls them. That starts with guaranteeing universal, enforceable access to health records. Patients should be able to obtain their complete medical history quickly and without unnecessary delays or obscure formatting. Access should be measured by usability and functionality, not just technical compliance.

Equally important is making it easy for patients to securely share their records across systems, institutions and tools of their choosing. Whether it’s transferring records to a specialist, participating in a clinical trial or using a digital health platform, patients should be able to direct the flow of their own data in real time, with full confidence in its integrity and security. That confidence, however, requires transparency about how third-party applications handle health information. Not all applications fall under HIPAA’s privacy and security rules, and patients may not always realize the difference. As new tools emerge to facilitate patient-directed sharing, it’s key that users understand the impacts on their data privacy.

Consent must also be modernized. Patients should have clear, granular control over how their data are used, not just in clinical settings, but in research, AI development and beyond. Yet, in an era dominated by lengthy click-through agreements and opaque data policies, the line between consent and awareness has become increasingly blurred. True informed consent means patients are notified clearly, in plain language, about how their data will be used, who will access them and for what purpose. Better tools and standards are needed to help bridge this gap.

Finally, health care organizations must be given strong incentives to prioritize portability and patient control. That means aligning reimbursements, certifications and partnerships with meaningful progress on data usability — not just checking boxes, but actually delivering on the promise of accessible, actionable health information.

Leadership is needed from across technology companies, hospital systems, payers, regulators and startups to build tools and standards that make patient-centered data a reality. AI will not transform health care if it operates in a vacuum. It needs the fuel of good data, and that fuel starts with patients. Let’s stop treating health data like a proprietary asset locked behind hospital walls. They belong to patients, and unlocking them is the first step to building a system that truly works for them.

Mika Newton is a health care technology innovator and CEO of xCures, where he has led the company’s transformation into a SaaS platform delivering AI-powered precision medicine and real-time clinical decision support.