Healthcare is All About Data … And Data Means Big Business

By Pete Harris, Executive Director, Austin Blockchain Collective

​I’ve known for a long time that healthcare relies on data in order to operate (no pun intended) effectively, safely and efficiently. It’s also been apparent that current processes to capture and share data are pretty much broken — one example that most patients can relate to are badly designed paper forms, usually partially completed with bad handwriting, and then faxed between providers. Some of it might end up being manually entered into an EHR system, mistakes and all, which of course can’t communicate digitally with similar systems at other providers.
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​All that paper, manual processing and silo-ed databases will need to change, and not just to make healthcare delivery more efficient and less costly for payers and providers, and to offer better outcomes for patients. Here’s why …

Healthcare is rapidly becoming a data-centric business. Not a data-driven business. Healthcare is a data business, as much as Bloomberg is, Carfax is, Google is. Its future lies as a vast big data business that just happens to leverage data in its attempts to help humans with their health challenges and make a profit doing so.

As Pamela Spence, Ernst & Young’s Global Leader for Health Sciences, Wellness Industry and Life Science, puts it: “We are moving from an era where health was a clinical science informed by data to one in which it is a data science supported by clinicians focused on individualized treatment.”

It goes without saying that blockchain — and emerging Web 3.0 — technologies will play an important role in this digital transformation, helping to secure datasets, acting as a platform to aggregate and share data and even supporting cryptocurrencies that reward those (people and IoT devices) that provide their data and entities that process it.

Of course, healthcare is not the only big data business that touches our daily lives often without affected individuals realizing. The more savvy among us have come to learn how major websites like Facebook, Google and Twitter as well as many smartphone apps harvest our data (often with our permission, provided unwittingly), and then sell it to advertising tech companies so that they can create profiles of individuals and target them with influential online advertising for their consumer product clients, political campaigns and even criminal enterprises.

Last year’s documentary The Great Hack shone a bright light on how politically-focused adtech company Cambridge Analytica worked with Facebook to influence voters in the 2016 US Presidential election. The Oscar-shortlisted movie has become a must watch for just about anyone working in the big data, advertising and political spaces, and went on to spawn activism related to data privacy, ownership and monetization.

Now, the #OwnYourData debate is coming to healthcare, as evidenced by recent press reports covering a couple of developments.

One relates to 23andMe, the popular personal DNA profiling service. The company recently announced that it has licensed an antibody based on the genetic material of it customers to Spanish pharma company Almirall. The antibody blocks specific proteins linked to skin conditions (psoriasis and lupus) and inflammatory conditions, such as ulcerative colitis, IBD and Crohn’s. Almirall has the right to develop drugs for worldwide sale.

Even though it will likely take years and significant financial investment for Almirall to develop, test and launch a drug, questions are already being asked about the potential profits from its commercial availability. Financial terms of the licensing deal were not disclosed but it seems likely that there will be financial upside for 23andMe if the drug proves to be a success. If that’s the case, so the questioning goes, shouldn’t the individuals that paid the company for their genetic profiles also benefit financially?

Apparently not, since around 80% of 23andMe’s 10 million customers have consented to have their genetic material used for drug discovery. One wonders, though, whether newer customers will withhold their consent once they realize that drug discovery can lead to huge profits.

As something of an aside, it occurs to me that the business model of paying to contribute data to a service that processes it and sells it back to its customers is nothing new. In the 1970s, a barely profitable news agency called Reuters launched a service for the global foreign exchange markets called Monitor. It was a huge hit for the company and led it to becoming a public company. That success caused many working for the banks that contributed their FX prices (at a cost, because the service gave them exposure) to wonder whether they had signed on to a bad deal. From time to time, the banks have formed their own ventures to bypass Reuters (now called Rifinitiv) and profit themselves but for the most part they’ve not been that successful. Perhaps this was an early lesson that #OwnYourData is a nice idea but it’s challenging to monetize.

Back to healthcare. Another health data deal that has caught the attention of many is one involving the Mayo Clinic, the prestigious Minnesota-based healthcare system. It recently announced a partnership with nference to accelerate drug discovery but it took a very different form than the one that 23andMe entered into.

Mayo’s data privacy approach includes:

• It provides only deidentified patient data that strips away patient identifiers.
• It leverages independent experts to ensure that the data has been fully deidentified.
• It implements a federated learning model to ensure that patients can avoid reidentification. Partners may query data but Mayo retains full control and custody of the underlying data — partners receive just results of their queries.
• Partners may not combine Mayo data with other data sources, such as consumer financial or geolocation data.
• Contractual agreements with partners mandate no attempt to reidentify patients.
  
  

“Mayo’s mission statement is the needs of the patient come first,” says Andy Danielsen, chair of Mayo Clinic Ventures. “That’s even reflected in our business deals.” The deal that Mayo hammered out with nference is designed to protect its patients’ data. Describing it as “nontraditional,” Danielson adds that “The hope is that we’ve got a unique model that others are going to follow.”

It remains to be seen what data sharing models will win out in the future, especially as the deep financial pockets of Big Pharma and Big Tech get involved. What’s clear though is that data — and technologies like blockchain that support its management — is at the core of the future of healthcare.
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A recent survey conducted by the University of Chicago Booth School of Business and Northwestern University’s Kellogg School of Management suggests that individuals and patients are waking up to the value of their health data. Some 93% of participants seemingly don’t want to share their data with the likes of Facebook at all. And if they decide to do so, they’ll ask $100,000 for it. That asking price is only likely to increase as the true value of their data becomes clearer once drugs developed from crowdsourced data hit the market and reap rewards for the manufacturers. Maybe we’ll soon see the first healthcare data millionaires? Or even billionaires?