September 27, 2023

As a well being coverage wonk and well being economist who has labored in pharmaceutical firms in the US, Latin America, and Europe, I’ve seen huge volumes of knowledge generated, gathered, aggregated, analyzed, shared, and resold by well being care firms and organizations. In my research with the world’s high medical statistics consultants on the College of Oxford’s Centre for Proof Primarily based Medication, I’ve additionally seen how flawed many datasets are, lacking crucial knowledge items and definitions, and but nonetheless utilized by the trade to make key choices.

I’m now extra sure than ever that sufferers are being severely exploited by way of their knowledge, its worth, and the profitability others are deriving from its aggregation and sale — although some are starting to comprehend simply how priceless their well being knowledge will be. They need to be capable of financial institution that worth.

One encouraging signal has been the 21st Century Cures Act, which supplies People the best to free, digital entry to their well being data, and additional regulates how well being knowledge are used. One other got here not too long ago when the Federal Commerce Fee — lastly — enforced the Health Breach Notification Rule for the primary time because it turned regulation in 2009. The FTC dominated that GoodRx, a preferred on-line vacation spot for locating the most effective worth for prescriptions, broke guarantees to customers about not sharing their knowledge with Fb, Google, and different third events for promoting functions, monetized its customers’ knowledge with out their consent, and dedicated different violations of the Well being Breach Notification Rule. The corporate agreed to pay a $1.5 million civil penalty.


Placing tooth into the Well being Breach Notification Rule sends a warning sign to firms that aren’t being sincere about using priceless well being knowledge. The rule requires companies not coated by the extra well-known (however typically misunderstood) Health Insurance Portability and Accountability Act of 1996 (HIPAA) to inform prospects if there’s a breach of individually identifiable digital well being info.

The GoodRx story confirms what trade insiders have recognized for years: that sharing well being knowledge is rampant amongst well being care suppliers, the monetary and IT firms that assist them, and the tech firms which are more and more blurring the road between well being, shopper, and promoting knowledge. In lots of circumstances, such knowledge sharing isn’t solely enabled by current rules, together with HIPPA, however is facilitated, serving to companies share knowledge to adjudicate insurance coverage claims and make funds, for instance.


The U.S. method to knowledge sharing stands in stark distinction with requirements now in place in different elements of the world, together with Europe’s General Data Protection Regulation (GDPR). Extra importantly, it goes in opposition to what individuals say they need, which is to freely share their knowledge for scientific or analysis functions that assist others, but in addition to share within the upside when their knowledge are extremely priceless, similar to once they assist result in the invention of a multibillion-dollar drug.

Affected person knowledge as the brand new oil

It’s been greater than 15 years for the reason that first declaration that “knowledge is the brand new oil.” However policymakers are nonetheless making an attempt to determine the best algorithm to verify this “new oil” will be dealt with pretty.

The higher the properties and potential of digital knowledge are understood, the extra it would behave like one thing much more priceless than oil. Knowledge are beginning to look increasingly more like a type of cash itself — a approach to alternate and transact, a approach to signify work accomplished, and a medium that may be traded, offered, or shared. Knowledge could also be hundreds of occasions extra priceless than oil, significantly when they’re extremely particular and personalised, and will be leveraged by multibillion-dollar industries.

However in contrast to cash, no world infrastructure exists to manipulate, handle, and watch knowledge transactions, and no collective establishments exist to guard knowledge safety or integrity. Well being care knowledge specifically exist in a wild west surroundings ruled by permissive rules that allow knowledge sharing and switch amongst entrenched pursuits slightly than defending particular person’s privateness.

At the moment’s system permits knowledge monopolies to function unfettered and reap earnings whereas knowledge laborers — on this case, sufferers and well being care professionals — obtain no compensation for his or her important contributions. This establishment is unacceptable, antiquated, and exploitative. But the well being care panorama is dotted with firms whose solely worth proposition is aggregating and reselling knowledge created by sufferers and docs.

Roche bought Flatiron, for instance, for $1.9 billion in 2018 based mostly on the projected future success of this enterprise mannequin. Cerner, Epic, McKesson, and UnitedHealth/Optum, in addition to smaller firms like IQVIA, Komodo, and Symphony Well being, do the identical. These firms, moreover, combine and match datasets to glean extra info — well being and monetary info for a similar anonymized affected person throughout quite a few suppliers — in ways in which don’t violate HIPPA however fall far in need of really defending privateness. Re-identification in these contexts is a larger risk than most people, or firms, might understand.

What to do

Two issues have to occur to empower affected person privateness and economics in relation to well being knowledge.

First, sufferers, well being care professionals, and shoppers normally have to know and perceive extra about how well being firms and others are sharing and utilizing their knowledge.

Second, the well being knowledge financial system should change into extra equitable. When Flatiron was purchased for $1.9 billion, how a lot of that worth had been generated by most cancers sufferers whose knowledge was Flatiron’s enterprise? Lots — but they obtained nothing from this transaction. They might even have obtained damaging worth, with some struggling to pay for his or her most cancers therapies whereas Flatiron offered their knowledge to Roche, one of many world’s largest makers of most cancers therapies.

The state of affairs remembers the case of Henrietta Lacks, the Black lady whose most cancers cells turned a cornerstone for analysis within the early Fifties however who obtained no compensation for her contribution to medical science, solely posthumous recognition.

Because the Well being Breach Notification Rule, the twenty first Century Cures Act, and apps like Epic’s MyChart draw consideration to how a lot knowledge people produce, individuals will demand accountability, transparency, and, finally, compensation. As soon as individuals work out their info is getting used for revenue, they may desire a share. Persons are blissful to share knowledge in the event that they suppose it offers well being advantages to themselves or others. Their altruism stops, although, once they really feel that firms are exploiting them, or cashing in on knowledge gross sales on one hand whereas sending them hefty payments on the opposite.

Banking knowledge

One answer to think about is following the logical conclusions that come up when knowledge and worth are considered in the identical approach as cash and banking. Whereas banks preserve their prospects’ cash secure and pay curiosity on it, they discover different productive makes use of for it whereas it’s below their care. Individuals can transfer cash between totally different banks, too, in the event that they’re sad in regards to the service they’re getting or apprehensive a couple of safety observe document.

We want the identical establishments and performance for well being knowledge.

New applied sciences make this imaginative and prescient potential, serving to guarantee moral and accountable knowledge utilization in addition to distributing earnings not solely to knowledge brokers and curators but in addition to knowledge turbines. Lots will be realized from monetary establishments on easy methods to implement this mannequin; the framework is there, and the necessity is stronger than ever.

Jennifer Hinkel is the managing director and chief development officer of the Knowledge Economics Firm, a Los Angeles-based firm growing the financial and expertise frameworks for personal knowledge vaults that individuals and firms use to package deal and handle their knowledge as digital property.