We need health databases like we have for organ donors

The practice of medicine often requires making the most of a tragic situation, learning from the disease to help people stay healthy. Look no further than the act of organ donation. The disinterested act of the donor can transform a loss into hope for the sickest patients, those identified most in need of an organ transplant by the United Network for Organ Sharing (UNOS), the national transplant system. Each organ donor has the potential to save up to eight lives and improve the quality of life of another 75. Many of us check the Organ Donor box on our driver’s license, often without much thought. One of the great paradoxes of medicine is that the end of a life can generate the possibility for others to live. When we think about the benefits of revolutionary therapy, or the clinical impact of an individual life, it is always a one-to-many story.

I have spent the better part of the last decade building a dedicated team focused on advancing precision medicine through data and technology, which is itself a one-to-many model. As the entire industry has made tremendous progress in harnessing data to inform medical research and point-of-care decisions, we realized: Why should data be treated differently by organs?

When data from multiple sources, including electronic health records, pathology slide imaging and radiological scans, and genomic sequencing results, are combined and anonymised across the healthcare system, we can significantly advance therapeutic discovery and development and find better treatment options. This longitudinal view of the current cancer landscape, of what works and what doesn’t, can help researchers identify the gaps where new treatments are most needed. Think of it as a system like UNOS, but for data. Real-world evidence is applied to guide the treatment of other patients more accurately and effectively. Applying the lens of data to health care, it is fair to say that the history of medicine is the progressive application of knowledge to biology. In our day, patient data has become the most sophisticated expression of applicable knowledge. So what can we do to make it a many-to-many model?

Ten years ago, if a patient responded well to a new therapy, this was the limit of the information learned. The doctor couldn’t be sure that the next patient to cross the threshold would experience the same. But now, with data-driven insights made possible by the use of artificial intelligence that allows researchers to rapidly interpret large amounts of clinical information to derive unique insights, there is much more to inform therapeutic choices and decisions. It is possible to establish connections from these data that could explain some positive outcomes among patients, whether they are tumor specific biomarkers or hereditary signals. The more data from unidentified patients can be collected, organized and harmonized, the greater the chance of finding the next breakthrough in care and, potentially, the difference between life and death for future patients.

Like organs, health data is powerful. When properly protected and anonymized in accordance with applicable laws and regulations, such as with organ donation, the data can enable doctors and researchers to learn from the experience of today’s patients to help those of tomorrow. We are already seeing it successfully applied every day as clinicians leverage data to personalize the care of each of their patients by identifying targeted therapies and promising clinical trials.

So how do we get there? As UNOS reports, organ transplants were managed entirely by individual hospitals only until the 1970s; however, that’s still where we are with data, which is managed at the individual health system level, with little infrastructure to allow for anonymous data sharing nationwide. We can only make the best use of data if they are harmonized across the industry and are inclusive of all patient populations. We need to remove technological barriers (e.g. interoperability, data standardization), share data between hospitals and healthcare institutions, and work together to create information that will help generations of patients.

Health data can create as much value as organ donation, especially in oncology. But, while a cancer diagnosis will always be devastating, perhaps we can advance insights-driven cures from anonymised patient collective data to turn those experiences into hope.

Eric Lefkofsky is the founder and CEO of Tempus.

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