The Price of Your Pulse: Who Really Owns Your Health Data?

Every Beat Counts

Every heartbeat recorded by a smartwatch, every night of sleep measured by a ring, and every symptom entered into an app adds to an expanding account of our bodies. It's a digital symphony of personal data that's growing louder with each passing day. But as we tune into this new health era, a crucial question emerges: who truly owns the data that's being collected from us?

"We should settle a question before sharing becomes harder to untangle," says Ashissh Raichura, CEO of Scanbo, a Vancouver-based health technology company.

In an age where artificial intelligence is rapidly transforming healthcare, we're not just monitoring our health—we're creating a valuable asset that's being used by corporations far beyond the scope of what we originally intended. This is more than just a privacy issue; it's about control, consent, and the future of digital ownership.

Where the Line Gets Blurred

The legal landscape around health data is as fragmented as the apps that collect it. While HIPAA regulates health information held by covered entities, many health apps fall outside its purview, leaving a gap in protection for everyday users. This lack of regulation has allowed companies to operate with minimal oversight on how our data is used, shared, or monetized.

Even the most well-intentioned policies can fail us if they're not actively enforced. A 2025 study published in npj Digital Medicine found that privacy policies from major wearable manufacturers were often lacking in transparency, making it difficult for users to know exactly how their data was being handled. The discrepancy between policy and practice highlights the urgent need for clearer standards and stronger accountability.

At a Crossroads

We now stand at a crossroads. Under the current system, individuals continue to click "agree" while companies determine how that information is used—often in ways that were never clearly explained. This kind of passive consent can be dangerous when it comes to our health data, which is among the most sensitive personal information available.

What happens if this becomes routine? Once secondary uses are embedded into business models, giving individuals a meaningful choice may require undoing decisions they barely understood. We need to act now, before that line of consent becomes too blurred to recognize.

Control as a Right

The right to control one's health data should be non-negotiable. Every person should have the ability to see what body data exists, who has accessed it, for what purpose, and for how long. That means permission should be specific and revocable for future optional uses. Data should also be portable—so leaving a platform doesn't mean losing your health history.

This is not about eliminating innovation or restricting the use of data for beneficial purposes like research. It's about ensuring that people are in control, making informed decisions, and receiving fair compensation when their data is used commercially beyond basic service provision.

The Economic Angle

There's an economic dimension to this debate as well. Imagine a pharmaceutical company needing data from individuals with a specific condition. A trusted intermediary could facilitate collective access, defining the research parameters, security measures, duration, and compensation. Participants could receive licensing payments under published terms.

This model respects both the value of individual data and the need for collaboration in advancing medical science. But it must come with safeguards to ensure that no one is coerced into sharing their data, especially those who may be more vulnerable due to economic or social circumstances.

A Model to Follow

Europe's approach offers a promising framework. The European Health Data Space Regulation, which came into effect in March 2025, combines expanded individual control with regulated reuse of health data. While it doesn't fully align with Raichura's proposed compensation model, it demonstrates that access and accountability can be pursued together.

National lawmakers should now require consumer health platforms to provide standardized dashboards showing data collection, access, and purpose. These dashboards should also allow users to easily withdraw from future optional uses, ensuring their data remains portable and independently auditable.

Building the Future Together

AI and humans can work together, but that partnership should begin with permission people understand and choices they can exercise. Our role in this digital future shouldn't be one of passive observers—it should be active participants.

The question isn't whether we'll use wearable tech or AI to track our health; it's about how we choose to do it. Will we build a system where individuals have agency, or will we create an economy where personal data is commodified without consent?

As someone who's spent years in the field of health technology, I believe we must start now—because every heartbeat counts, and so does our right to control what happens with it.