TEFCA, EPIC and the Liberation of Healthcare Data

Thank you for reading NewHealthcare Platforms' newsletter. With a massive value-based transformation of the healthcare industry underway, this newsletter will focus on its impact on the medical device industry reflected in the rise of value-based medical technologies, and platform business models that are significantly transforming payer and provider healthcare organizations. I will occasionally share updates on our company's unique services to accelerate and de-risk the transition!

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Hello again friends and colleagues,

In the age of artificial intelligence, data has become the new oil. It's the fuel that powers the engines of innovation, driving breakthroughs in fields ranging from finance to marketing to healthcare. And in healthcare, the stakes couldn't be higher. We're talking about data that could help us unlock the secrets of disease, revolutionize the way we diagnose and treat illness, and ultimately save countless lives.

But there's a problem. Right now, much of that data is locked away in silos, trapped within the walls of individual health systems and providers. It's as if we have a vast, untapped reservoir of oil, but we don't have the pipelines to transport it or the refineries to process it. As a result, patients are missing out on the full potential of their own health data. They're not able to easily access and share their information, to use it to make informed decisions about their care, or to contribute it to research that could lead to new cures and treatments.

Imagine, for a moment, what could happen if we were to liberate that data. Patients would be empowered to take control of their health like never before. They could seamlessly share their records with doctors and specialists, ensuring that everyone involved in their care has a complete picture of their health history. They could use apps and tools to track their symptoms, monitor their progress, and receive personalized recommendations. And they could choose to share their data with researchers and innovators, fueling the development of new therapies and technologies that could benefit everyone.

But it's not just about individual patients. Freeing health data from its silos could also transform the healthcare system as a whole. It could enable more efficient and effective care coordination, reducing redundant tests and procedures. It could help identify public health threats and trends more quickly. And it could accelerate the pace of medical research, allowing scientists to access vast troves of real-world data to study diseases and test new treatments.

So why hasn't this happened already? Why are we still stuck in a world of data silos and fragmented care?

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The answer, in part, lies with the health systems themselves. Many of them have been hesitant to share data, seeing it as a competitive advantage rather than a public good. They've invested in proprietary data systems and created health data aggregators, like the Mayo Platform and Truveta, hoping to harness the intellectual and financial benefits of their patients' data for themselves.

Now, let me be clear. These health systems have every right to use data to improve their own operations and care for their patients. But when they hoard data and prevent it from being shared more broadly, they're ultimately holding back progress for everyone.

No discussion of healthcare data would be complete without including Epic Systems, the behemoth whose electronic health record (EHR) system is used by a staggering 56% of U.S. hospitals and 28% of ambulatory clinics. In other words, Epic houses an enormous fraction of the country's healthcare data – data that could hold the key to unlocking countless medical breakthroughs and transforming patient care.

For years, Epic has faced criticism for its closed, proprietary approach to data. Its systems have been notoriously difficult to integrate with those of other vendors, leading to frustration among providers and patients alike. But recently, the company has been a participant in the government's ambitious effort to create a nationwide framework for health data sharing called TEFCA.

Understanding the Trusted Exchange Framework and Common Agreement (TEFCA)

TEFCA is a visionary initiative spearheaded by the Office of the National Coordinator for Health Information Technology (ONC). Born out of the need to establish a unified framework for secure and efficient health data exchange, TEFCA aims to break down the barriers that have long hindered the seamless flow of information across the healthcare ecosystem.

At its core, TEFCA is built upon three key objectives. First, it seeks to establish a universal governance framework, setting a baseline for policies, technical standards, and best practices that will guide nationwide interoperability efforts. Second, TEFCA aims to simplify connectivity among disparate health systems, facilitating secure information exchange to improve patient care and optimize healthcare value. Finally, the framework places a strong emphasis on individual access, empowering patients to easily retrieve and share their health data with providers and apps of their choice.

The TEFCA framework comprises several key components that work in harmony to achieve these objectives. The Common Agreement serves as the legal foundation, outlining the rules and requirements for participation in the network. Standardization efforts ensure that data is captured and exchanged in a consistent, machine-readable format, enabling seamless integration across systems. Additionally, TEFCA introduces the concept of Qualified Health Information Networks (QHINs), which act as the backbone of the framework, facilitating secure data exchange and ensuring compliance with the Common Agreement.

By establishing a robust and interoperable health data exchange infrastructure, TEFCA holds the potential to transform the healthcare landscape. Patients stand to benefit from improved care coordination, as providers gain access to a more comprehensive view of their medical history, reducing the risk of errors and enabling more informed decision-making. Healthcare organizations can leverage the framework to streamline operations, reduce administrative burdens, and unlock new opportunities for collaboration and research. Moreover, TEFCA lays the foundation for the development and deployment of innovative AI-powered solutions that can revolutionize disease diagnosis, treatment, and prevention.

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In a recent announcement, Epic shared that they will enable patients to access their health records through third-party apps and platforms, giving them unprecedented control over their own data. Upon full implementation, this will be a major step forward for interoperability and patient empowerment.

But for Epic, the decision is not without its risks and challenges. On one hand, the company has to contend with the mounting pressure from patients, advocates, and policymakers who have long called for greater data liberation. In an age where consumers are increasingly demanding access to and control over their personal information, Epic risked being seen as a roadblock to progress if it didn't embrace TEFCA.

On the other hand, Epic has to balance these demands with the interests of its core customers: the health systems and providers who have invested heavily in its software and rely on it to run their operations. For many of these customers, data is a key strategic asset, one that they are reluctant to share with competitors or third-party apps. Epic will need to placate patients and regulators while reassuring their customers that they are not undermining their own data strategies or put their businesses at risk. It's a delicate balancing act, and one that will be closely watched by the entire healthcare industry.

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TEFCA represents a major shift in the way we think about health data. It's a move away from the old model of silos and fragmentation, towards a new era of openness, sharing, and patient empowerment. But it's also a shift that will create new tensions and conflicts, as different stakeholders jockey for position in the emerging data economy.

How this all plays out remains to be seen. But one thing is clear: the healthcare data wars are coming, and the stakes couldn't be higher. Will we continue down the path of silos and fragmentation, or will we embrace a new model of openness, collaboration, and patient empowerment?

The answer to that question will have profound implications not just for individual patients, but for the future of healthcare itself. It will determine whether we're able to fully harness the power of data and AI to transform medicine, or whether we'll remain stuck in a world of inefficiency, duplication, and missed opportunities.

Ultimately, it will come down to a fundamental question of values. Do we believe that health data belongs to patients, and that they should have the right to access and share it as they see fit? Or do we believe that it's a proprietary asset, to be controlled and monetized by a handful of powerful institutions?

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See you next week,

Sam