The value of a medical record has evolved significantly over the past two decades. From being a simple, localized tool for direct care to a commodity that can be bought, sold, and analyzed at an unprecedented scale, health data is now a major player in the global economy.

Two thousand years ago, physicians in Egypt documented their patients' symptoms and treatments on papyrus scrolls. These early medical records served a simple purpose: they supported direct care, were referenced in case discussions, and played a role in medical education. However, as records have gone digital, they have transformed into something else entirely: a valuable resource that can be exchanged, aggregated, analyzed, and monetized.

Governments, researchers, and corporations are now tapping into the value of health data, often without the knowledge or benefit of the individuals whose data they use. The market for health data is estimated to be between $2 billion and $8 billion, with pharmaceutical companies buying Real World Data (RWD) to identify candidates for clinical trials and assess treatment effectiveness.

However, despite the significant value placed on health data, many individuals remain unaware of what their medical records are worth or how little control they have over them. A recent survey found that 70% of Americans would only be willing to share their records for more than $1,000, but the actual price those records fetch is often far lower.

For instance, despite claims that hackers can sell health data for $250 per record, a security breach at UnitedHealth Group compromised the data of over 190 million Americans. The company paid the hackers $22 million in ransom, which translates to just 11.5 cents per record.

In contrast, records associated with specific diseases, especially rare or complex conditions, can command far higher value. For example, primary care records may be valued as low as 50 cents per patient, while oncology medical records can be worth between $950 and $2,000 per patient.

Genomic data alone can also fetch a high price, with some estimates suggesting it could be worth up to $5,000. However, the value of health data is not just about the price; it's also about the revenue that can be generated over time from selling data to multiple customers.

Despite the significant value placed on health data, individuals often lack the market power or technical means to sell their data. The demand side of the data economy generally needs hundreds or thousands of records to suit research purposes, making it difficult for individuals to capitalize on their own health data.

The story of 23andMe illustrates this point perfectly. The company amassed genetic data from over 15 million people and offered inexpensive at-home DNA tests, promising ancestry insights and health risk predictions. However, the real business model was always about data, and the company's valuation plummeted after a 2023 data breach affecting 6.9 million users.

The decline of 23andMe serves as a cautionary tale for consumers who willingly handed over their intimate biological data without considering the consequences. As the health data economy matures, we must grapple with fundamental questions: Who benefits? Who decides how data is used? And how can patients be treated not just as data points but as participants in a system built on their personal information?

In our next article, we'll explore how health data is actually priced and what that tells us about the real value of your medical record.