One Goal; One Contract: How a Nationwide Health Data Sharing Framework is Revolutionizing Interoperability

Think of a highway where there is no guidance to regulate how drivers must operate while on it. It would be chaotic and dangerous, to say the least. The same is true for the information networks that healthcare providers and patients traverse daily.

While we often focus on the technical challenges of health IT interoperability, the process of negotiating terms and expectations among exchange partners are equally critical in determining success or failure. Health data sharing agreements must address governance, policy, and legal questions. This time-intensive negotiation process plays out again and again, each time a new health data sharing partnership is pursued.

There is a better way.

Organizations seeking to share health data with multiple partners, as most interoperability strategies require, will benefit from utilizing a common trust agreement. By choosing one comprehensive and legally-binding framework, your organization can save time and money each time a new data sharing connection is made without negotiating one-off agreements and duplicative work. There are a few nationwide agreements already in production serving complementary functions, including the first health data sharing network common legal agreement implemented by the eHealth Exchange and the first network-to-network common legal agreement implemented by Carequality. Choosing the best common nationwide data sharing agreement for you will depend on a careful review of governance, responsibilities of the exchange partners, policies related to the purposes for which data will be exchanged, data re-use, and other privacy and security obligations, technical standards, liability and other key components. 

Nationwide health data sharing agreements, particularly those developed through an open, multi-stakeholder consensus process, can eliminate the need for point-to-point arrangements while sharing the costs to implement and maintain a legal, policy, and governance framework across a large community of exchange partners. These trusted exchange frameworks and common legal agreements enable data sharing to occur more easily, while creating a foundation for trust among data sharing partners, eliminating costly legal negotiations and establishing a foundation for trust.

The eHealth Exchange, the largest health data sharing network in the United States, was conceived and developed within the Office of the National Coordinator for Health IT (ONC) in 2008. At that time, it was determined that a common legal agreement was critical to success of the project, known as the Nationwide Health Information Network (NHIN, or NwHIN).

The ONC brought together 11 federal agencies and 18 private sector partners to hammer out health data sharing contract details. Creating a comprehensive, multi-party agreement required an intensive, consensus-based process for development of the necessary governance, policies, security and privacy obligations to enable data sharing across governmental and private-sector partners, using multiple technologies and methods of exchange (e.g. push, query, publish-subscribe, etc) and for a multitude of use cases. The end result is the Data Use and Reciprocal Support Agreement (DURSA), still in use today.

The DURSA is a multi-party trust agreement that establishes mutual responsibilities, obligations and expectations for secure health data sharing among public and private organizations. All of these responsibilities, obligations and expectations create a framework for safe and secure health information exchange, one that is designed to promote trust among participants and protect the privacy, confidentiality and security of the health data that is shared.

The DURSA has saved the eHealth Exchange’s first 75 participants an estimated $60M. It has fueled 400% network growth since The Sequoia Project took over management of the eHealth Exchange from ONC.

The eHealth Exchange continues to be the principle way – and in some cases the only way – the federal government exchanges health data with the private sector because of the DURSA. Can you imagine if the Veterans Health Administration (VHA) had to independently contract with each of its 75+ private sector partners? The DURSA, drafted with key government input, enables the VHA and other federal agencies to exchange data with providers with efficiencies and growth that would otherwise not be possible.

While government-leadership was key to the launch of the eHealth Exchange, Carequality is a market-driven interoperability initiative that leverages the experience of diverse stakeholders from across the healthcare continuum to develop a network-to-network framework. The Carequality Interoperability Framework consists of multiple elements, including legal terms, policy requirements, technical specifications, and governance processes, which operationalize data sharing under an approved set of Principles of Trust. This network-to-network trusted exchange framework and common legal agreement addresses current and emerging market concerns, including privacy, security, information blocking, patient consent and code of conduct to create an open, transparent and equitable health data sharing community of EHRs, health IT vendors, payers, government agencies, and others. Carequality savings calculations are in progress, but it is expected to have even greater savings due to the scale of the unifying framework.

Thanks to the ONC leadership in 2008, we now have nearly 10 years of insights from real-world use of common trust agreements, with evidence of the benefits and scalability of this model to enable nationwide data sharing. We apply what we learn by constantly improving and amending the agreements, which are flexible enough to evolve with an ever-changing industry. As new use case studies and technologies are adopted, these agreements are adapted.

I was fortunate to be a part of the development and now maintenance of the first-ever, national-level health data sharing agreement. Although the initial process was intensive, we know it was worth it. Common trust agreements, such as those utilized by the eHealth Exchange and Carequality, are not only saving time and money; they are saving lives by accelerating health data sharing nationwide.