We need health data banks, as we have for organ donors

The practice of medicine often requires you to make the most of the tragic situation, to learn from the disease to help people stay healthy. Look no further than the act of organ donation. The donor’s selfless act can turn the loss of hope into the sickest patients – those most in need of organ transplantation from the United Organs Sharing Network (UNOS), the national transplant system. Each organ donor has the potential to save up to eight lives and improve the quality of life of 75 others. So many of us check the organ donor field in our driver’s license, often without much thought. One of the great paradoxes of medicine is that the end of one life can give others a chance to live. When we think about the benefits of breakthrough therapy or the clinical impact of individual life, it’s always a one-on-many story.

I have spent most of the last decade building a dedicated team focused on improving precision medicine through data and technology – which in itself is a one-to-many model. As the entire industry has made tremendous progress in using data to inform medical research and decisions at the time of care, it enlightened us: Why should data be treated differently by authorities?

When data from a variety of sources – including electronic health records, pathology slides and X-ray scans and genomic sequencing results – are combined and de-identified across the healthcare system, we can make significant progress in therapeutic discovery and development and find better options. for treatment . This longitudinal view of the current cancer landscape, what works and what doesn’t, can help researchers identify gaps where new treatments are most needed. Think of it as a system like UNOS, but for data. Real-world evidence is used to guide the treatment of other patients more accurately and effectively. Applying the data lens to healthcare, it is fair to say that the history of medicine is the progressive application of knowledge to biology. In our time, patient data has become the most complex expression of applicable knowledge. So what can we do to make it a multi-to-many model?

A decade ago, if a patient responded well to a new therapy, that was the limit of the information learned. The doctor couldn’t be sure that the next patient to walk through the door would experience the same thing. But now, with data-driven insights made possible by the use of artificial intelligence that allows researchers to quickly interpret vast amounts of clinical information to extract unique insights, there is much more information about treatment choices and solutions. From these data, connections can be made that could explain certain positive outcomes among patients, whether specific tumor biomarkers or hereditary signals. The more de-identified patient data 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 the organs, health data is powerful. When properly protected and identified in accordance with applicable laws and regulations – as is the case with organ donation – the data can enable physicians and researchers to learn from today’s patients’ experiences to help tomorrow’s. We are already seeing it being implemented successfully every day when doctors use data to personalize the care of each of their patients by identifying targeted therapies and promising clinical trials.

So how do we get there? According to UNOS, organ transplants were managed entirely by individual hospitals only until the 1970s; however, we are still there with data that is managed at the level of an individual health system, with little infrastructure that allows the sharing of unidentified data nationwide. We can only make the best use of data if it is harmonized across the industry and includes all patient populations. We need to remove technological barriers (eg interoperability, data standardization), share data between hospitals and healthcare institutions, and work together to create insights that will help generations of patients.

Health data can be as valuable as organ donation, especially in oncology. But while the diagnosis of cancer will always be devastating, we may be able to improve the care provided by insights from collective de-identified patient data to turn those experiences into hope.

Eric Lefkofsky is the founder and CEO of Tempus.

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