Life, Death, and Data

Patients know their health data is valuable. Will they ever be able to capture its worth?

A Data Ecosystem in Critical Condition

The origin of Data Economics as an applied science is closely linked to health care; the first commercial applications of the Lydion Engine were to package administrative health data into Lydion data assets and use those Lydions as a component of shared answers to adjudicate pharmaceutical contracts for a high-risk, high-cost therapy. Members of our team went on to publish research on Lydion applications in health care contracting for various scenarios: oncology drugs, in EU hospitals with GDPR requirements, and paired with financial instruments to hedge longevity risk.

As we built out these applications, we learned more about the fraught state of data in the health care world, and were perplexed that the most prolific data generators—patients and clinicians—are somehow cut out of the data value chain, while enormous financial rewards accrue to third-party data harvesters and aggregators. Despite data protection laws that purport to secure health data, such data middlemen are able to accrue vast datasets of extraordinarily personal and, arguably, impossible-to-anonymize data points, including everything from medical billing and insurance information to the most unique sequences of individual DNA and RNA, through data sharing loopholes such as the HIPAA Business Associate Agreements. Their companies are worth billions; a single data license with a pharmaceutical company can yield them millions of dollars in a year. In some cases, these same companies own lab or diagnostic firms that turn around and send patient co-pay bills to collection agencies, even though they would have no business model if it were not for these patients’ data.

Something about this is wrong.

This edition of The Lydion Magazine is highly personal to us, not only because of our philosophical and economic beliefs around data ownership and what the science of data economics can enable, but also because the contributors to this edition have all been there—as patients struggling to get our hands on our own records, as researchers trying to understand why health data is sometimes so limited, and as health care industry leaders frustrated that the pace of innovation seems to stall based on our inefficiencies in gathering data. Any health economist will point out the many market failures and inefficiencies that plague health care delivery systems. A health data economist will point out all of the ways that data could be solving these problems, if only we had the will to flip the system.

The good news is that patients, clinicians, and scientists are waking up. We are increasingly realizing the value of our time, our expertise, our labor, and our data. The 21st Century Cures Act demands that patients can access their data in a digital format and without cost. Despite pushback from EHR companies and hospital groups, this access seems to be moving ahead. In our own conversations with industry executives, coming from organizations that range from hospitals like Kaiser Permanente, Johns Hopkins, and Mayo Clinic to life sciences leaders at Pfizer, Roche, Novartis, and J&J, the questions have become more insightful and pressing: “What is our data worth? How do we capture that value? How do we ensure that data we purchase is valid and accurate? How do we become more patient-centric in how we use data? How do we protect data—ours and that of our patients who trust us?”

These are high-quality questions. In speaking with patient advocacy leaders, the questions are even more urgent, because increasingly-sophisticated patients realize existing data may hold the key to cures, but only if it can be unlocked from data silos and freed from behind hospital walls. They are savvy enough to know that no amount of aggregated claims or EHR data will advance a new drug through FDA approval, and they demand better control and transparency in how their data is used.

We will comment more below, but first, we’ll share voices from the front line.

Jennifer Hinkel - Editor-in-Chief of The Lydion Magazine, and Managing Director of The Data Economics Company

Arka Ray - Managing Director of The Data Economics Company

Ben Bagamery - Senior Engineer at The Data Economics Company and Producer of The Lydion Magazine

What Patients Want

Patients are frustrated by a lack of control and transparency when it comes to their most confidential and sensitive health data. Researchers, clinicians, and med tech entrepreneurs see a pathway from patient data to highly effective, personalized medical interventions and potential for radical improvement in health outcomes based on care tailored to the individual. In this mix, however, it seems as if health insurers and health data aggregation and resale companies are reaping outsized profits while others do the work of data generation and care delivery.

Samira Daswani, technologist, cancer survivor, and now founder, recounts her own experience as a tech-savvy cancer patient who doggedly pursued her own data, from hours on hold to CD-ROMs and other outdated technology. Dr. Cory Kidd, a robotics and AI scientist turned successful medtech founder, points out the clinical value of making personal decisions based on patient-specific data, and how the larger health data market introduces as many risks and questions as potential benefits. Jennifer Hinkel, Editor-in-Chief of The Lydion Magazine and Managing Director of The Data Economics Company (and a veteran of the biotech industry and cancer survivor herself) looks back on a data deal done by one of the big names in tech and the questions that patients should have around where their data is going, and who benefits.

A Way Out of This Maze?

Data economics offers a new paradigm with which to view this conundrum. It tells us that data, when packaged and identifiable, is not merely the “new oil,” but that it can literally function the same as money. Early examples of this line of thinking were evident in the rise of cryptocurrencies, but digital tokens barely scratch the surface of what it means to package and “assetize” real world data. When your data is money, are you content with it to live in a multitude of different places, letting other people spend it as they wish? Of course not. Yet this is where we are with health data.

Fortunately, we have technology solutions to data ownership, data provenance, data traceability, and data vaults. We already see these technologies transforming other sectors, such as agriculture, and empowering those who add productivity and effort to the system, yet are often forgotten. These same technological advancements allow patients, clinicians, researchers, life sciences companies—whoever generates new data, in fact—fully control their data assets and how those are utilized. This is the promise of the science of data economics and its applications.

In health care, this paradigm simultaneously opens a million doors and flips the existing model on its head. Networked data sharing, with privacy controls and traceable access, becomes controllable and valuable. Data aggregation and anonymization create more risk than value, and data middlemen die out. Institutions and patients that generate data become part of a data economic internet, awarding credit for contributions, and when those data points contribute to discoveries or cures, the patients and researchers alike participate in enduring upside. Breakthrough treatments and optimal health outcomes are massively incentivized, while entities that extract more value than they contribute are penalized and unprofitable. Investigators go for moon shots. Patients get personalized care and precision medicine.

This is the vision of what data economics can achieve for health care. And it all starts where it should start—with patients.

Jennifer Hinkel - Editor-in-Chief, The Lydion Magazine, and Managing Director of The Data Economics Company

Arka Ray - Managing Director of The Data Economics Company

Ben Bagamery - Senior Engineer at The Data Economics Company and Producer of The Lydion Magazine

Move (not too) Fast, Do No Harm: The Promise of New Technologies

Because the medical field pledges to “Do No Harm”, implementing new technology in the health care sector likewise needs to be measured, thoughtful, and put patient outcomes at the center. We have seen enough failures, dangers, and false starts to know that caution is warranted. Patient and provider interactions should remain sacrosanct; technology should be an extender and an enabler, not adding burdensome tasks or introducing new risks without proving larger health benefits.

Serial founder, lecturer, and business leader Ed Bukstel leads us through a retrospective of how tokenization in health care has generally failed, offering a cautious but optimistic view of the path forward. Jennifer Hinkel reflects on use cases for Data Economics on the financial side of health care, and envisions what might finally happen when patients hold the keys to their own data assets.