Why interoperability needs to balance innovation, patient access and security

Improvements in data sharing require giving patients more control over their data and ensuring the security of sensitive information.



This article is part of Critical Condition: The delicate state of healthcare data, our November/December 2024 COVERstory.

Healthcare interoperability has advanced significantly in the past decade, driven by the widespread adoption of electronic health records across healthcare organizations. Even those that traditionally relied on paper records have largely transitioned to digital systems, enabling more efficient and accurate data management. 

This digital shift has greatly improved the ability of healthcare providers to share patient information, facilitating better coordination and continuity of care. Major EHR vendors, such as Cerner and Epic, are now concentrating on creating standardized protocols for data sharing. These efforts aim to enhance patient experiences by ensuring that healthcare providers can access consistent and comprehensive patient information, regardless of where the care is provided. 

The Trusted Exchange Framework and Common Agreement (TEFCA) continues to play a pivotal role in these advancements, providing a nationwide framework for interoperability. One of the key components of TEFCA is the development of Qualified Health Information Networks (QHINs), which serve as central hubs for data exchange among healthcare entities. 

QHINs are designed to streamline the secure sharing of health information, ensuring that data can be accessed and shared efficiently across different systems and providers. This initiative not only supports better clinical decision-making and patient care but also aims to address longstanding challenges related to data silos and fragmented healthcare systems. 

As these standards and networks continue to evolve, they promise to significantly enhance the quality and accessibility of healthcare services, ultimately leading to improved patient outcomes. 

Despite advances, barriers remain 

Despite these great advancements, there are still hurdles. For example, data sharing across organizations using the same EHR system remains inconsistent becaise of varying data standards and user proficiency levels. 

TEFCA, along with the Office of the National Coordinator for Health Information Technology (ONC), is addressing these challenges by developing standards like FHIR for information exchange. However, setting up FHIR varies between systems, leading to inconsistencies that need resolution. Hopefully, in the next five years, there will be a clearer understanding of what "standard" truly means in this context. 

One of the biggest challenges in healthcare interoperability is the lack of a unique patient identifier. This leads to cumbersome processes and delays in patient care. Patients often find themselves caught in the middle of finger-pointing between organizations over who should handle the data requests. 

There's a clear need for greater patient involvement in managing their data. Imagine if patients could authorize data sharing with a single, comprehensive permission, much like managing cookie preferences online. This could significantly streamline data sharing, reduce the confusion that currently exists and ultimately lower healthcare costs by improving the efficiency of data access.  

Safeguarding patient data 

Balancing the fine line between giving patients more control over their own data and ensuring the privacy and security of sensitive information requires a thoughtful approach. 

One way to empower patients is by enabling them to authorize a broader sharing of their medical information. This could include their granting blanket permission for data to be shared with any healthcare provider hospital, or insurance company involved in their care. 

Similar to how advanced directives work, this broader authorization would streamline the process, reducing the need for repeated consent requests and minimizing delays in accessing care. This approach could be managed similarly to Internet cookie settings, where patients can choose to accept all data sharing or customize their preferences. This would make it easier for patients to manage their own information and ensure that their care providers have access to the necessary data without unnecessary bureaucratic hurdles. 

However, it is crucial to maintain strong privacy and security measures to protect sensitive information. Even with broader data-sharing permissions, patients should have the ability to revoke consent or adjust their preferences at any time, akin to the flexibility provided under HIPAA regulations.  

This system would need to be carefully regulated to ensure that patients' data is only used in ways they have authorized and that it remains secure from unauthorized access. By adopting a standardized approach to data sharing, patients could enjoy a smoother, more efficient healthcare experience, while still having the peace of mind that their privacy and security are safeguarded. This balance is essential for improving patient outcomes, reducing care delays and enhancing overall patient satisfaction. 

Technological advancements a way forward 

Innovative technologies like AI, machine learning and natural language processing (NLP) are at the forefront of enhancing interoperability. By standardizing and tagging data, NLP enables easier data searching and retrieval, crucial for healthcare providers who need quick access to specific information. 

Unlike cumbersome PDFs, which require tedious scrolling, discrete data sets enable providers to swiftly access the necessary details, improving efficiency and care quality. However, legacy systems that stored entire patient records in single PDFs pose challenges, as extracting specific data points from these documents is difficult. AI, ML and NLP are now being employed to break down these large documents into usable discrete elements, ultimately aiming to reduce the risk and liability associated with data mismanagement.  

These advancements highlight the importance of a more structured approach to data handling in healthcare. Moving forward, it's imperative that regulatory bodies like the ONC enforce stricter standards to ensure that data stored discreetly is accessible and usable. This will be key to maximizing the benefits of these technological advancements in healthcare. 

The progress made in healthcare interoperability during the past decade is both promising and transformative. The transition to electronic health records and the development of frameworks like TEFCA and technologies like FHIR have laid a solid foundation for more efficient and coordinated healthcare. 

However, challenges such as inconsistent data standards, the lack of a unique patient identifier, and balancing patient data access with privacy concerns remain significant obstacles. Addressing these issues will require ongoing collaboration between healthcare providers, technology vendors and regulatory bodies. 

With the continued integration of advanced technologies like AI, machine learning and NLP, the healthcare industry is poised to overcome these challenges, ensuring that data is not only accessible but also secure and actionable. As these efforts continue, the ultimate goal remains clear: to enhance patient care, streamline healthcare processes and improve outcomes for all. 

Kel Pults, DHA, MSN, RN, NI-BC, NREMT is chief clinical officer and vice president of government strategy at MediQuant.


This article is part of Critical Condition: The delicate state of healthcare data, our November/December 2024 COVERstory.

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