I’ve been a member of the Linux Foundation (LF) Research Advisory Board for the past three years. At a September, 2023 meeting of the Advisory Board, we discussed that one of the few industry sectors in which the LF doesn’t have projects is healthcare, — despite the size and importance of healthcare around the world. The LF had launched open source healthcare initiatives in the past, but they all eventually failed.
A paper on Digital Health in the 21st Century published in June of 2022 by the US National Academy of Medicine noted that “Revolutionary advances in digital health are transforming health, medicine, and biomedical science, and redefining and re-engineering the tools needed to create a healthier future,” including artificial intelligence, cloud computing, and the increased adoption of electronic health records (EHRs).
So, perhaps it’s time to try again, and LF Research made the decision to launch a healthcare study, led by Anna Hermansen, Researcher and Ecosystem manager in LF Research, to understand the obstacles for open source adoption and interoperable data standards in the healthcare sector. A year later, in October of 2024, Hermansen released the study’s findings and recommendations in a report, “An Open Architecture for Health Data Interoperability: How Open Source Can Help the Healthcare Sector Overcome the Information Dark Ages.”
The state of the health tech sector
“The digital transformation of healthcare has led to the exponential growth of data stores useful for providers, researchers, institutions, and companies to improve care for patients,” wrote Hermansen. “A significant aspect of this digital transformation was the introduction of EHRs around the world, which are digital systems used to capture and manage health data, primarily in a hospital setting. Despite widespread adoption of EHRs, accessing this data remains difficult, as these systems do not interoperate well with each other. … This problem stems from technological, regulatory, cultural, and operational particularities that, in combination, make this sector uniquely challenging to effectively digitalize.”
“Healthcare is a unique and highly complex sector due to a number of factors.” These include:
- The irregular, non-fungible, and lifetime demand for healthcare: “When a patient demands healthcare, this typically comes at unpredictable times and often becomes urgent.”
- The ethical and moral expectation placed on physicians: The decisions of healthcare providers could well mean the difference between life and death, which place “a moral and social obligation at the center of this market.”
- The strict and complex regulatory landscape: The highly regulated nature of the market “introduces significant financial considerations for those developing healthcare products and services.”
Dr. Tony Shannon, Head of Digital Services in the Irish Government CIO Office said that “hospitals probably are the most complex organizational unit on the planet — there is so much going on in a typical hospital.”
Healthcare systems, he added, are a complex convergence of people, process, and technology. “The medical professionals are trained in the clinical domain but don’t understand technology; the technologists are trained in the technical domain but don’t understand the clinical domain; and the management administrators are trained in management science but don’t understand either the clinical process or the technical stack.”
Nonstandardized data exchange infrastructure
“Despite important gains in the last two decades, made possible by significant investment by payers, providers, and the federal government in electronic health records (EHRs), progress toward interoperable systems, and advanced technology to coordinate care and manage disease, the promise of digital health remains illusory,” said the previously referenced report from the US National Academy of Medicine. “The ability to use interoperable digital technology to improve the effectiveness, efficiency, equity, and continuity of care remains substantially conceptual. For example, digital interfaces in inpatient care systems are often clumsy; volumes of health data are mostly sequestered, inaccessible, and difficult to aggregate in a meaningful and actionable way, in part due to the ongoing need for evolving data standards.”
“In this complex regulatory, financial, technical, and governance environment, an important aspect of the health system suffers — health data,” wrote Hermansen in the LF research study. “As the sector has digitized, and the data available in digital formats has grown exponentially, these different factors have locked data into silos that become challenging or even impossible to access and share.”
“Different data, even data that some may consider adjacent to care, need to be able to come together to build an adequate picture of the patient — and this relies on standards.” But, this has proved quite difficult due in part to the wide variety of health data standards and models.
For example, there are a number of popular global and regional health data standards which don’t work well with each other, such as Fast Healthcare Interoperability Resources (FHIR), SNOMED Clinical Terms (CT), Logical Observation Identifiers Names and Codes (LOINC), and the OMOP Common Data Model. And there are different standards for the various stages of the health data lifecycle: content standards for data creation, code systems for data formatting, information standards for data analysis, exchange standards for data flow, and privacy standards for data protection.
Another major problem is the market power of proprietary EHR platforms. The developed world largely relies on a handful of major EHR platforms to handle hospital data, such as Epic and Cerner, that work very well within one institutions but don’t interoperate with each other, mostly for economic reasons that keep their users locked into their platforms.
Open source for health data management
“Is open source the way to challenge this industry?,” asked Hermansen. “Open source — and, in particular, open science — is a foundational tenet of healthcare.”
Over the past few decades, open source communities have been very successful in driving major new technological transformations. For example, in the 1990s, the Internet and World Wide Web brought a badly needed culture of standards, interoperability, and collaboration to the IT industry. Open network protocols, e.g., TCP/IP, were widely embraced across the marketplace, making it possible to interconnect systems from any vendors. Internet e-mail protocols enabled people to easily communicate with anyone on any system. Similarly, the Web’s open standards, — HTML, HTTP, URLs, — enabled any device connected to the Internet to access information on any web server anywhere in the world. And Linux emerged as an open source Unix-like operating system that over time has been embraced by just about all industries.
“Health data systems are in need of a similar transformation that prioritizes collaboration, transparency, and interoperability,” wrote Hermansen. “These facets are fundamental to the open source value proposition, and yet major stakeholders in healthcare are absent from open source communities.”
The report lists some of the key benefits of open source in the healthcare sector.
Open source encourages health equity by reducing costs. “The ethical characteristic of healthcare makes it a good application area for open source as a way to reduce costs.”
Open source building blocks de-risk innovation. As has been the case across industry verticals and technology horizontals, the open sourcing of software projects creates a roster of common “building blocks” on which to develop their respective proprietary applications while avoiding unnecessary duplication.
Open source removes vendor lock-in. As discussed earlier, proprietary EHR platforms don’t interoperate with each other, making it very difficult to share data across institutions. This is a particularly serious problem for a sector like healthcare that requires lifelong health records for individuals. In addition, “open source means procurers are not beholden to the whim of a single provider, who may decide to kill a product or service.”
Open source is trustworthy. In addition to removing vendor lock-in, open source projects are perceived as more trustworthy because their open source communities provide an important, long term support system.
AI the catalyst
While trying to understand the potential use of AI in healthcare systems, I came across the work of John Halamka, president of the Mayo Clinic Platform, an organization that aims to drive innovations in diagnosis, treatment, and operational improvements in healthcare systems. He’s also a prolific writer, and has been a key advisor of our healthcare research study since its inception.
“In the 21st century, it’s impossible to redefine medicine without taking into account advances in computer science in general and artificial intelligence in particular, both of which are having a profound impact on clinicians and patients,” wrote Dr. Halamka in Redefining the Boundaries of Medicine, a recent book which he co-authored. The book articulated a few of the major healthcare challenges, where AI could play a major role including:
- The massive amount of new medical and technical information being generated every year.
- The analytical skills, computer literacy, and clinical experience required to reach accurate, informed diagnoses in complex patient scenarios.
- The ability of AI-based applications to significantly improve efficiency and reduce errors by handling many routine administrative and operational processes and procedures.
“Could AI now help us better deal with the inherent complexity of healthcare systems?,” asked Hermansen in the LF report. “As in other industries that have embraced open source, a disruptive factor may speed up this transition. For healthcare, AI could play that role, given its significant potential to solve problems and address constraints in healthcare,” she added. “The opportunities for its application span activities of automation, detection, and prediction — often with more precision, and at much faster speeds, than healthcare providers.”
Moving the sector forward: Recommendations from experts
In the fifth and final section of the report, Hermansen discussed a few of the recommendations she received from the experts she interviewed.
Building a digital health architecture. “The digital health sector is lacking an architecture that defines and standardizes the different components, nodes, and technologies within the system and how they all fit together. No particular company owns this architecture, since it is community developed, and it provides the protocol on which proprietary applications can be built and interoperate.”
Standardizing data, semantically. “A digital health architecture requires standardization, meaning that there is still a need for standards currently in use. … This includes standard data formats and standard APIs so that these applications can talk together.”
Trying new business models: Innovation around incumbents. “As seen throughout this study, incumbent players hold a tight grip over data sharing. Instead of trying to reduce the market power of these organizations directly, some interviewees suggested working around them.” For example, try a “dual track approach, where more innovative and agile solutions are built up in areas such as community care or where work is happening across borders, while the more monolithic structures remain in the hospitals.”
“Current health data management systems around the world lack the sustainability to meet healthcare demands and technological advances such as AI,” wrote Hermansen in the report’s conclusion. “The complexity of health systems, the market dynamics, and the unique characteristics of the sector all lead to poor interoperability and innovation. There are strong philosophical, economic, and technological reasons why open source should be considered when looking for solutions, but many challenges and perceptions of open source hinder its adoption. This study calls for the adoption of an open architecture to build interoperability into the foundations of health systems, which will improve innovation, standardize efforts, and, ultimately, improve health outcomes.”As has been the case in hundreds of open source projects, an open architecture would play an important role in bringing collaborators together to solve shared problems and benefit from standard protocols on which they can build their own applications.
“The Linux Foundation invites stakeholders across the sector to consider these recommendations and the role they can play in their adoption.”
The biggest fear I see with healthcare providers is the fear of losing data which is bread and butter to them. While this fear is warranted it's not true. Rather open technology will immensely enrich the data. This immense innovation was realized in the finance sector primarily due to embracing open technology on top of legacy systems that hold critical data. Before the 1970's there were no talks of the SWIFT systems, but in finance you are not relevant without including SWIFT. Similarly healthcare low-key knows the power of standardization, but interoperability and continuity of care is something that is sadly going to take a little bit longer to realize. I believe we are on track, but we must be cognizant of the fact that we might leave others behind, and moreso build inequitable systems. Those left behind will not only be a burden to healthcare, but also to those who advance;we saw what happened during the pandemic. It's imperative this be mission oriented as much as it developmental.
Posted by: Dr. Eugene Kolah | November 14, 2024 at 10:54 AM
About open standards, I don't see "openEHR" to be mentioned, which is kind of a model that sits in the middle of FHIR (and other HL7 standards) and OMOP (and other models for data analytics), and plays fairly well with terminologies (like SNOMED CT) and coding systems (like LOINC, UCUM, the ICDs, etc).
More info https://openehr.org/
Posted by: Pablo Pazos | November 14, 2024 at 12:22 PM
openEHR indeed appears 17 times in the actual report! Although I can see there's some confusion on whether openEHR is a software solution (WRONG) or specifications to build such (RIGHT). That is very common!
https://www.linuxfoundation.org/hubfs/LF%20Research/lfr_healthdata2024_102824a.pdf
Posted by: Koray Atalag | November 15, 2024 at 08:09 AM
Thank you for sharing your thoughts.
The observation that “medical professionals are trained in the clinical domain but don’t understand technology; technologists are trained in the technical domain but don’t understand the clinical domain; and management administrators are trained in management science but don’t understand either the clinical process or the technical stack” encapsulates one of the most significant challenges in healthcare today.
Having worked in healthcare IT for over 15 years, I firmly believe that technology holds the transformative power to bridge these gaps and drive impactful solutions. However, achieving this requires more than just technological innovation—it demands cross-disciplinary collaboration.
Bridging the Gaps:
Open Standards and Interoperability: Standards such as Fast Healthcare Interoperability Resources (FHIR), SNOMED Clinical Terms (CT), Logical Observation Identifiers Names and Codes (LOINC), and the OMOP Common Data Model are foundational for achieving true data interoperability. These standards and models ensure that data can be exchanged, understood, and utilized consistently across systems, enabling better clinical decision-making and research.
SMART on FHIR: This framework exemplifies how open standards can support innovation. By enabling developers to build modular applications that integrate seamlessly with EHRs, SMART on FHIR provides clinicians with contextually relevant, actionable data directly within their workflows.
AI in Healthcare: Artificial intelligence offers transformative potential in augmenting clinical expertise. From identifying hidden patterns in real-world data to enabling predictive analytics, AI complements clinical judgment and enhances personalized care. When combined with interoperable standards like FHIR and data models like OMOP, AI-driven insights become more accessible and actionable.
Public-Private Partnerships: Collaboration between government agencies, private organizations, and open-source communities is essential for driving systemic change. These partnerships can tackle challenges like funding, governance, and accessibility, fostering a robust ecosystem for innovation.
Looking Ahead:
In the coming years, the convergence of open standards like FHIR, SNOMED CT, LOINC, and OMOP with scalable technologies such as SMART on FHIR and AI-driven tools will revolutionize healthcare delivery. These advances will support not only better patient outcomes but also more efficient resource utilization and reduced clinician burnout.
Open architectures and data models will play a pivotal role in creating a healthcare system that is truly interoperable and patient-centric.
Posted by: Vishwasrao Salunkhe | November 21, 2024 at 11:00 AM