Can You Sell Your Health Data for Healthcare Technology?

Tech companies collect patient health data for medical centers, researchers, and others and sell it for profit. Should you be paid for your information?

Hospitals and other medical facilities have huge amounts of protected health information (PHI) in their patients’ electronic health records (EHR). Details include your age and gender, medical history, medications, lab and imaging reports, and procedures and other treatments you may have had.

That wasn’t true 20 years ago. In fact, Congress has invested billions to help healthcare make the transition away from paper files.

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Federal rules require healthcare providers to make EHRs available to patients and easy to share. That’s convenient for your doctors and you.

But there’s a side effect. Brokers collect and organize digital data from different providers and sell it, after stripping it of identifying information like your name and address.

The data sets are valuable to researchers, pharmaceutical companies, and marketers, among others. Hospitals, many of which are strapped for cash, have been deluged with offers from data brokers.

You’re protected to some extent. All parties are still required to comply with the federal Health Insurance Portability and Accountability Act (or HIPAA), and the Federal Trade Commission has brought a series of cases policing infringements.

Purging records of identifying details is a developing science, but the consequences of the industry are unknown. You should care. When your data is packaged and sold, you may be vulnerable to breaches that can lead, for example, to identity theft.

One proposal is for patients to receive payment when their data is sold or used — something like royalties, small payments that could add up over time. For example, when you get an x-ray, you might sign a licensing agreement that allows your healthcare provider to sell it. A few companies have already offered consumers discounts or rewards in programs with fine print stating that they’ve signed away privacy restrictions.

For the moment, you’re helpless if you don’t want your data sold, even if your identifying information is removed. But public resistance has grown. Under a law that starts in 2026, California will offer a free centralized hub that allows residents to delete their data from brokers’ records.

Why PHI is worth so much

PHI, even de-identified, is extremely valuable — both financially and scientifically. In many ways, PHI is a crucial and integral part of the future of health technology.

Artificial intelligence allows researchers and doctors to find patterns that help advance knowledge and medical care. A data set might help doctors recruit patients for a clinical trial, for example. In general, research is stronger when there’s more people involved and more details about each person.

It’s a big money industry. A case in point: Google-backed health technology startup, Flatiron Health, created software specifically to digitize records for cancer patients. It had assembled PHI for more than two million oncology patients when pharmaceutical giant Roche Holding bought the company, for about $1,000 per record, according to a report in Bloomberg Law.

PHI broker IQVIA is an example of the mammoth amount of data available for the right price. IQVIA says it has more than a million data sources providing access to non-identified records for more than 800 million people from countries around the world.

What do consumers want?

Americans are happy to see electronic records exchanged between their medical providers. To take it further, many support systems like fingerprints on records to ensure mistakes don’t occur, according to a large Pew poll. They’re also favorable to data sharing for research.

But when it comes to business purposes, opinions turn sour.

The Booth/Kellogg School Financial Trust Index, created by two business schools, gauges consumer trust in many industries. About 93 percent of Americans polled said they were unwilling to share their health data with large tech companies for free. When researchers analyzed the polling data, they found that almost half of the respondents said they wouldn’t sell their health data to a tech company for any amount less than $100,000.

Some 27 percent said they would be open to sharing their health records for less than $1,000, while 13 percent would sell their PHI for between $1,000 and $10,000.

In such a scenario, researchers concluded, “the healthcare industry’s profitability for tech corporations would immediately disappear.”

At the moment, the industry remains highly profitable, just not in cash for patients. Yet, sharing your data for research may still benefit you when it advances medical and health knowledge for everyone.

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