The benefits of health data portability—and how to design for it
February 14, 2025
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Why health data portability is key to a technologically enabled future
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A version of this blog first appeared as “Can I get a (data) follow?” in Design Quarterly, Issue 23.
Many of us have experienced the frustration of siloed data in healthcare. At every step of our treatment journey, we must repeat our information: our symptoms, prescriptions, medical history, and the results of our last tests. Our data doesn’t automatically follow us where we go. But healthcare technology is advancing.
So, we’re taking a closer look at health data portability. And let’s start with an important question.
Why is the US health data system so fragmented?
The US healthcare system is fragmented and competitive. Health systems often use a mix of databases and data management tools that are customized to their needs. When hospitals or systems merge, they often acquire legacy systems that don’t integrate. It’s common for a single health system to have many systems managing different departments. These data management systems were historically built for customization rather than interoperability. And that’s why healthcare data has been slow to flow across platforms.
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Harrisburg University’s UMPC Health Sciences Tower in Harrisburg, Pennsylvania.
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Today, while our records have been digitized, true digital integration is still a long way off. However, we’re beginning to see glimmers of progress with platforms like Apple Health and Epic’s MyChart, where patients can access their health data. Yet, the complexity of creating a fully integrated system remains.
Emerging global trends in health data portability
Around the world, countries are beginning to see the value of centralized, portable health data systems. Three trends are shaping the future of healthcare data portability.
Centralized health systems and data portability: Denmark and Estonia have created centralized health records. Those records follow citizens throughout their care journey. These systems create a more cohesive healthcare experience. They allow data to move with patients as they access different providers. Estonia, for instance, has implemented a highly secure e-health system where 99 percent of the country’s health data is digitized. It is accessible to both doctors and patients. This model provides smoother care transitions and eliminates redundancies in data entry.
Blockchain for data security and portability: We can manage portable healthcare records using blockchain. Projects like Europe’s My Health My Data allow individuals to securely share health data. Authorized healthcare providers can access health data across borders. With blockchain, providers can better coordinate care and preserve patient security and privacy.
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Hackensack Meridian Health’s Hackensack University Helena Theurer Pavilion and Central Utility Plant in Hackensack, New Jersey.
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The value of FHIR standards: The Fast Healthcare Interoperability Resources (FHIR) standard is gaining traction around the globe. The FHIR standard serves as a foundation for exchanging healthcare information. In regions like Australia and the UK, FHIR standards help connect systems. These standards ease data sharing between hospitals, clinics, and primary care providers. This is crucial for enabling health data portability. It ensures that no matter where patients go their data can seamlessly follow.
How will health data portability affect outcomes and staff efficiency?
Health data portability is not only about convenience; it’s about improving care outcomes and transforming the healthcare workforce.
Improved patient outcomes: In Finland, the healthcare sector adopted centralized health records. Studies show a marked improvement in patient outcomes in countries that have done the same. When providers have access to a patient’s full health history, they can make more informed decisions. This leads to fewer medical errors and faster diagnoses. This continuity of care is helpful for patients with chronic conditions who require long-term monitoring and intervention.
Reduced redundancies and enhanced care coordination: A portable health record reduces the need for repeated tests and assessments. And it cuts healthcare costs. In Canada, provinces like Ontario have begun centralizing health records through systems such as Ontario Health. These centralized systems allow care teams to seamlessly share test results, diagnoses, and treatment plans. This reduces redoing of work and allows for more coordinated care across providers.
" }Health data portability is not only about convenience; it’s about improving care outcomes and transforming the healthcare workforce.
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Efficient use of health staff: Health data portability also improves the work environment for healthcare staff. In systems that are fully integrated, clinicians spend less time gathering and entering data. It reduces their administrative burdens. With the rise of AI-powered decision support tools, care teams can process health data in real time and get actionable insights. In the UK, for example, care teams are using AI to analyze portable health records. Predictive analytics help nurses and doctors anticipate patient needs before symptoms escalate.
Empowering patients and their caregivers: Data portability gives patients control over their health information. It empowers them to take an active role in their care. Wearables, such as Apple Watch and Fitbit and their health-monitoring apps, collect a wealth of health data. Through integration with centralized health systems, this data can provide a real-time, comprehensive view of a patient’s well-being, shared easily with their care team. This promotes more proactive healthcare management, preventing emergency visits and hospital readmissions.
Digital health twins are the future of personalized medicine
Digital twins are a promising development in healthcare technology. They are virtual replicas of patients built from their health data.
They can be used for predictive modeling and personalized care. Using digital twins, healthcare providers can provide care before physical intervention. They can simulate treatment plans, test potential drug interactions, and predict outcomes. Countries like Singapore are pioneering research in this area. They are creating detailed digital twins for individuals in clinical trials. With digital twins, data portability can speed the discovery and deployment of new treatments.
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Achieving true data portability and interoperability in healthcare can lead to significant cost savings and improved care outcomes. (Sources: World Economic Forum, IDC Information and Data, Arcadia.io, West Health Institute)
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Design implications of health data portability
The shift towards health data portability will change how we design for healthcare. Data will become more a part of every aspect of care. And patient rooms and clinical environments will need to accommodate the technology that supports a seamless flow of information.
Four aspects of health data will influence design:
Enhanced connectivity: Health spaces will need to be equipped with high-speed Internet, secure data access points, and large display screens that allow doctors and patients to review health data in real time.
Continuous monitoring: Both wearables and in-room monitoring devices will become more popular as we move forward. Clinical spaces will need to support continuous data collection. Hospitals will need the bandwidth and infrastructure to manage this data flow.
Rethinking patient interactions: Remote monitoring and virtual consultations are likely to become standard for many patients. That means the traditional setup of in-person visits may shift. Exam rooms will need to facilitate hybrid care models. We can design patient rooms to make virtual interactions and data review easy.
Building upgrades enhance health data accessibility: Health data portability requires building upgrades. Alberta Health Services (AHS) and its partners stored health information in hundreds of databases across the province. It consolidated those systems to launch Connect Care as a provincial public health information system. With Connect Care, AHS health records will be accessible from any AHS and partner location in the province. Connect Care required AHS to upgrade its technology, hardware, space, and connectivity. Our team helped upgrade the treatment, extended care, and lab facilities. The project added new telecommunication rooms and modifications to existing ones.
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In the past decade, the number of US hospitals engaging in the interoperable exchange of electronic health information has greatly increased. (Source: Source: American Hospital Information Technology Supplement Survey)
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A technologically enabled health future
Digital technology will shape the future of healthcare. And health data portability will help us unlock the power of this technology. Portability enables us to deliver care that is more personalized, efficient, and accessible. Our goal is to build a healthcare system that benefits patients and clinicians. Embracing global trends and ensuring interoperability will help us get there.
We will continue to generate more health data through wearables, smart devices, and other digital tools. It’s increasingly vital that we can share this data along our health journey. As we look to the future, we can see that healthcare will not just be delivered at the bedside. It will be delivered through an integrated, continuous flow of information that provides a 360-degree view of our health.
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