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Forbes
9 hours ago
- Forbes
What Is Your Health Record Worth? The Unseen Economics Behind Your Medical Data
Two thousand years ago, physicians in Egypt documented their patients' symptoms and treatments on papyrus scrolls. These early medical records served a simple, localized purpose: they supported direct care, were referenced in case discussions, and played a role in medical education. For most of human history, medical documentation was a tool for the physician, with little utility beyond the immediate circle of care. But in the modern era, as records have gone digital, they have transformed into something else entirely: a commodity. Today, medical records are exchanged, aggregated, analyzed, and monetized at a scale unimaginable in the paper era. Governments, researchers, and corporations alike are tapping into their value. Yet, for all the headlines about billion-dollar data deals and the promise of AI-driven breakthroughs, the average American remains largely unaware of what their medical data is worth—or how little control they have over it. In fact, the reality of the health data economy may surprise many. While one survey suggests that 70% of Americans would only be willing to share their records for more than $1,000, the actual price those records fetch is often far lower. For instance, despite claims that hackers can sell health data for $250 per record, consider last year's Change Healthcare hacking episode. A security breach compromised the data of over 190 million Americans at the company, which is a UnitedHealth Group subsidiary. UnitedHealth Group reportedly paid the hackers $22 million in ransom—an implicit valuation of just 11.5 cents per record. More challenging still, individuals are rarely in a position to benefit from the emerging market for health data in any meaningful way. The Evolution of the Medical Record Historically, the medical record was a tool of practice and pedagogy. In the 19th and 20th centuries, hospitals and teaching institutions developed increasingly sophisticated case files, supporting diagnoses, treatments, and post-mortem reviews. But the paper record had limits: it was static, siloed, and difficult to scale. Its value was largely confined to the provider who created or maintained it. This began to change with the advent of electronic health records (EHRs), especially following the 2009 enactment of the HITECH Act as part of the American Recovery and Reinvestment Act. The federal government allocated billions to incentivize the adoption of EHR systems, explicitly aiming to create a "learning healthcare system" that could generate insights from aggregated clinical data. Digitization brought tremendous promise. Actual medical records, with discrete and detailed clinical data, could now be searched, shared, and studied. Health systems could coordinate care more effectively. Researchers could analyze trends across populations. And during the COVID-19 pandemic, the ability to report and track public health data in real time became critically important. But digitization also created new opportunities—and incentives—for data monetization. Who Buys Health Data, and Why? Health data is now big business, with most estimates pegging the market between $2B and $8B. And for good reason: the ability for researchers to investigate vast de-identified digitized datasets to understand how both individuals and therapies behave and respond in the real world (known as Real World Data or RWD), versus the rigid confines of clinical trials, holds the promise of increasing the pace and lowering the cost of medical discovery. In many ways, de-identified health data is nothing new: researchers and others have had access to some data for decades, thanks to medical claims data created by billing and reimbursement between providers and health plans. Claims data, however, can be thought of as a mile wide, an inch deep: it can tell the journey of patients, but isn't sharp on the details. What is new, then, is the depth and robustness of health records themselves: clinical notes, lab values, procedures, outcomes, etc. Pharmaceutical companies now buy RWD to identify candidates for clinical trials and assess treatment effectiveness. Health insurers analyze it to manage costs and stratify patient risk. Startups and AI firms use it to train algorithms, while public health agencies rely on it to monitor disease patterns. Despite these widespread uses, there's still little transparency around what health records are actually worth. That question is further complicated by ethical and legal considerations, which shape not only the price of data but who gets to profit from it. The Ethics and Regulation of Health Data Sharing A recent glaring example of the public's unease with health data and big tech is the story of Project Nightingale. In 2019, Google and Ascension Health launched a partnership to analyze millions of patient records. Both organizations acted within legal boundaries: HIPAA allows patient data sharing for treatment, payment, and healthcare operations purposes. Nonetheless, a whistleblower raised concerns, and public backlash was swift. Critics argued that the scale of the data sharing and the lack of transparency violated patient trust. Healthcare data can be used for other purposes (including research, analytics and/or commercial purposes), but must first be deidentified. The process of deidentification, defined by HIPAA, requires the removal of 18 types of identifiers or an expert determination that the risk of reidentification is very low. But deidentification isn't foolproof, especially with advanced re-identification techniques. And even when the rules are followed, public sentiment may differ from regulatory interpretations. The Project Nightingale controversy illustrates a central tension: legal permissibility does not always equate to ethical acceptability. As data sharing scales and becomes more commercialized, that distinction becomes increasingly salient. What Does The Data Say About The Value Of Health Data? So what is the value of a medical record? According to conversations with several industry experts, the answer depends on several factors. And for people interested in the value of their own health data, it may be disappointing. In general, records of healthy individuals or those with common, well-managed conditions tend to be worth very little. Their data is often less useful for clinical research, predictive modeling, or training AI models. On the other hand, records associated with specific diseases, especially rare or complex conditions, can command far higher value. This is particularly true when the data includes structured lab results, imaging, medication histories, and genomic information. For example, primary care records may be valued as low as 50 cents per patient. Medical imaging data (from MRIs, CT scans, ultrasounds or X-rays) may be worth $30, depending on the underlying medical condition, purpose and location of the scan. In contrast, oncology medical records can be worth between $950 and $2,000 per patient, and genomic data alone can command $1,700 to $5,000. When genomic data is linked with phenotypic data, a combination prized by precision medicine companies, the value can exceed $6,000. Also worth noting is that these figures tend to represent value, not prices. Value in this context refers to the revenue a record holder can generate over time from selling data to multiple customers, rather than the price they might get from an individual buyer. For instance, while Tempus AI, a genomic lab company, realized an average of $1,899 in revenue per de-identified record, this was over a five year time horizon. Further data from Tempus suggests that health data may be subject to normal economic laws: as supply increases, prices may come down. Its revenue generated per record for new patients has decreased over successive years, from $502 per record in 2019 to $128 per record in 2023 (based on the author's firm's analysis). Further, the price a data broker or pharmaceutical company is willing to pay varies depending on the specific use case they are focused on, the supply and availability of similar data, and the ease of acquisition. Why It's Not Easy To Cash In There are several reasons why individual Americans can't easily profit from the value of their health data. First, while federal law (via HIPAA) guarantees a right of access to one's medical records, most patients do not have a comprehensive or consolidated copy. Health data is often fragmented across hospitals, clinics, pharmacies, labs, and insurers. Second, even with digital access, which most providers are now enabled (and effectively mandated) to make available, individual patients lack the market power or technical means to sell their data. The demand side of the data economy (e.g., pharmaceutical companies) generally needs hundreds or thousands (or more) records to suit their research purposes. Aggregated datasets are more valuable and easier to use than individual records. As a result, natural aggregators like hospitals, health systems, and EHR vendors are better positioned to meet that demand. Third, most individuals lack the necessary tools to de-identify their data or license it for specific purposes. While some technology companies are attempting to create platforms for personal data monetization, these remain nascent and face significant adoption and regulatory hurdles. There are companies out there seeking to change this paradigm. San Francisco-based Evidation Health has raised hundreds of millions of dollars to create a technology platform to help consumers aggregate their health and wellness data and enable them to participate in sponsored research. 'Individuals' data has value, and we believe they should share in that value,' notes Evidation's CEO Leslie Oley Wilberforce. Despite Evidation's progress - the company raised more capital in 2024 to accelerate growth - consumer awareness and adoption of these types of platforms remains nascent. The result is a market that extracts value from consumers without empowering them to participate. Americans may believe their data is worth hundreds of dollars, but without access, infrastructure, or market presence, they remain on the outside looking in. Case Study: 23andMe Perhaps no example better encapsulates the promise and peril of consumer health data than 23andMe. Once a darling of the direct-to-consumer genomics boom, the company amassed genetic data from more than 15 million people. It offered inexpensive at-home DNA tests, promising ancestry insights and health risk predictions. But the real business model was always data. 23andMe struck multiple deals with pharmaceutical companies, including a major collaboration with GlaxoSmithKline. These agreements were designed to monetize its enormous trove of genomic and phenotypic data for drug discovery and clinical research. Yet by 2025, the company had filed for Chapter 11 bankruptcy. Just weeks later, it was acquired by Regeneron for a mere $256 million—a dramatic fall from its $6 billion valuation just a few years prior. The decline was accelerated by a 2023 data breach affecting 6.9 million users, and growing public unease over privacy practices. The 23andMe story is a cautionary tale. Consumers willingly handed over their most intimate biological data, only to see that data become an asset in corporate transactions they had no control over. Even if Regeneron maintains 23andMe's stated privacy policies, the legal and ethical framework governing genetic data in the U.S. remains weak and fragmented. Conclusion: A Market With Limited Participation We began this story on papyrus scrolls, when medical records served the care of a single person and had little value beyond their immediate use. Today, we live in an age where those records are digitized, replicated, analyzed, and sold, often without the knowledge or benefit of the people to whom they pertain. So what is your health data worth? The disappointing answer is: it depends, but don't quit your day job, because you likely can't capitalize on it yet anyway. 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 the next article in this series, we'll explore how health data is actually priced: who pays what, for which kinds of data, and what that tells us about the real value of your medical record.
CNN
13 hours ago
- CNN
FDA warns against eating certain shrimp sold at Walmart amid investigation into radioactive contamination
Source: CNN The US Food and Drug Administration on Tuesday urged the public not to eat certain bags of frozen raw shrimp sold at Walmart, citing concerns about unsanitary conditions and radioactive contamination found in shipments from the same supplier. The FDA said that a radioactive isotope, cesium-137, was detected in a sample of breaded shrimp detained at US ports – in Los Angeles, Houston, Savannah, and Miami – from an Indonesian supplier named BMS Foods. Those contaminated shipments never reached the US market. However, because Walmart's raw frozen shrimp came from the same supplier – and the agency said it 'appears to have been prepared, packed, or held under insanitary conditions whereby it may have become contaminated with Cs-137' – officials advised consumers to avoid eating them. The levels of cesium detected – about 68 becquerels per kilogram – were well below the FDA's intervention level of 1,200 Bq/kg. Still, regulators issued the advisory out of caution, citing the potential risks of cancer from long-term, low-dose exposure and problems at the supplier's facility. The advisory applies to 2-pound Great Value bags of white vannamei shrimp, all carrying a best-by date of March 15, 2027. They were distributed to Walmart stores in at least 13 states: Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Missouri, Mississippi, Ohio, Oklahoma, Pennsylvania, Texas and West Virginia. The agency is advising consumers who purchased the shrimp to throw it away or return it, and, said an investigation is ongoing in conjunction with Indonesian seafood regulatory authorities. Walmart confirmed to CNN that it 'immediately recalled the product from impacted stores.' CNN has also reached out to the supplier for comment. See Full Web Article
Yahoo
18 hours ago
- Yahoo
BBC forced to correct report claiming Gazan woman died from malnutrition
The BBC was forced to issue another correction on Monday after reporting that a Gazan woman had died from malnutrition, when in fact she was suffering from leukemia. On Sunday, the BBC ran a story headlined "Malnourished Gazan woman flown to Italy dies in hospital." BBC journalist Rachel Muller-Heyndyk reported that the woman "was evacuated to Italy for treatment while severely emaciated," and highlighted, "The UN has warned of widespread malnutrition in Gaza" that has largely been blamed on Israel. "The University Hospital of Pisa said that she suffered a cardiac arrest and died on Friday, less than 48 hours after arriving," the initial report said. "The hospital said she had suffered severe loss of weight and muscle, while Italian news agencies reported she was suffering from severe malnutrition." However, the headline was later changed to "Gazan woman flown to Italy dies in hospital" and added that further reporting from both the hospital and Israeli aid officials found a "very complex clinical picture," including that the woman had suffered from leukemia. The BBC published a clarification at the very bottom of the article. Bbc Marred By Recent String Of Retractions And Apologies Related To Israel-hamas War Coverage "This article's headline originally said that Marah Abu Zuhri died of malnutrition, with the introduction stating that she suffered a cardiac arrest and died on Friday," the correction read. "The headline has been amended to remove the reference to malnutrition being the cause of death in what the hospital described as a 'very complex clinical picture.'" Read On The Fox News App In a comment to Fox News Digital, a BBC spokesperson said that it was not aware of the woman's leukemia before publishing and corrected the headline and subsequent tweet on the story after learning more details. "We were not initially aware that Marah Abu Zuhri was being treated for leukemia," the statement read. "In line with usual editorial practice, we added this to the story after the Israeli authorities put the information into the public domain, in what the hospital has described as 'a very complex clinical picture.' We have amended the original headline and tweet and added an explanatory note." The BBC has had a long history of issuing corrections and apologies regarding its reporting on the Israel-Hamas war, with errors that tend to favor or sympathize with the terrorist organization. The BBC was one of several news organizations that rushed to report false claims made by the Hamas-controlled Gaza Health Ministry that Israel had bombed the Al-Ahli Baptist Hospital, resulting in 500 civilian casualties, shortly after the October 7 terrorist attack. In November 2023, the BBC apologized after misquoting a Reuters report and distorting a quote by an IDF spokesman claiming the IDF was "targeting people including medical teams as well as Arab speakers" in Gaza's Al Shifa hospital. The IDF spokesman had actually said that Arab-speaking soldiers were on the ground to ensure aid made its way to the hospital. The BBC apologized for reporting unproven claims about Israel carrying out "summary executions" of Gaza civilians in January 2024. In February, the BBC apologized after its anchor Nicky Schiller referred to Israeli hostages as "prisoners" on air. Bbc News Issues On-air Apology For False Claim Israel Targeting Staff And 'Arab Speakers' At Gaza Hospital Also in February, the BBC pulled the documentary "Gaza: How To Survive A Warzone" from its streaming platform after unintentionally profiling a Hamas member's 13-year-old son in the film. The BBC issued an apology for being unaware of the connection at the time and added a new note to the film to offer more context. An internal BBC report in July found that the broadcaster breached editorial guidelines for the film after it was learned that three members of the production company Hoyo Films, which produced the film, knew that the boy's father was a Hamas official. The probe reprimanded the BBC for not being "sufficiently proactive" with its due diligence ahead of broadcast and admonished it for a "lack of critical oversight of unanswered or partially answered questions" regarding the documentary. Last month, The New York Times also had to issue a note that an emaciated child displayed on the front page as evidence of famine in Gaza was not "born healthy" as reported, but was actually suffering from a preexisting condition unrelated to the conflict with article source: BBC forced to correct report claiming Gazan woman died from malnutrition Solve the daily Crossword
