From manual data entry to real-time insights: IKNL’s journey with Firely
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SubscribeIKNL is an independent knowledge institute for oncological and palliative care on a mission to reduce the impact of cancer. This mission is driven by insights derived from real-world data in the Netherlands Cancer Registry (NCR, Dutch: NKR), a comprehensive database of over 2.7 million patients and 3.2 million tumors.
Faced with challenges in data standardization and interoperability, IKNL partnered with Firely to transform their data processes. By leveraging FHIR standards and Firely’s suite of products, they’re achieving impressive results, including real-time data integration and improved insights into cancer care.
The Story of IKNL
IKNL plays a pivotal role in reducing the impact of cancer by collecting and providing access to essential and reliable data, offering healthcare professionals, policymakers, and researchers valuable insights to improve cancer care. In an increasingly data-driven world, IKNL acts as a trusted advisor, enabling the healthcare sector to make informed decisions based on independent and evidence-based data.
The Problem
When it comes to populating the NCR, IKNL faces two major challenges in achieving its mission.
Manual data collection and scalability issues
With 130,000 new cancer patients each year, over 200 data managers spend a significant amount of time abstracting information from complex clinical medical records each day. Given the rising number of cancer patients and the need for more detailed data, the current data collection process is too resource-intensive and not scalable for future needs.
Lack of standardization across hospitals
IKNL’s CMIO, Melle Sieswerda, highlights another challenge: “Data from hospitals isn’t standardized. Even when hospitals use the same systems, variations in how information is recorded make it difficult to compare or analyze data reliably.”
He expands on this further: “Although this does not impact clinical care directly, it is challenging for secondary uses like research where we need to compare apples to apples. The lack of standardization and interoperability among hospital systems really hinders exploration and analysis of the data within EHRs. As a result, it limits our ability to learn from routine clinical practice and improve healthcare.”
The Solution: Why FHIR?
To address these challenges, IKNL identified FHIR as the best solution. Here’s why FHIR stood out:
- FHIR’s data model closely aligns with clinical processes, making it easier for hospitals to adopt.
- Its ability to support both primary and secondary use sets it apart from other standards.
- The emphasis on data exchange allows storage decisions to remain flexible and localized.
- Being mandated by governments in regions like the US (with HIPAA) and the EU (Xt-EHR) provides the stability and assurance required for long-term adoption.
Partnering with Firely
During an evaluation of tools to support their adoption of FHIR, IKNL identified Firely as the ideal partner. “Firely is the company to call if you have questions about FHIR—they are the source of knowledge,” Melle Sieswerda says.
This partnership included the implementation of Firely’s modelling tools—Simplifier and Forge—as well as Firely’s FHIR expertise, as one of the initiators of FHIR. Compared to open-source alternatives, Firely’s Simplifier and Forge tools stood out for their user-friendly design and robust support.
“Forge’s graphical user interface makes it easier for people to get started with profiling because it shows all the fields they can fill in. This is particularly helpful for people with clinical backgrounds,” explains Harmke Koning, Clinical Informatician at IKNL.
“And with Simplifier, we can easily publish information and share progress early in the project, even with incomplete profiles. That’s something that helps involve stakeholders with a clinical background effectively,” Harmke continues.
Key Projects
Firely worked closely with IKNL to implement solutions tailored to important projects such as:
- R(H)ONDA: A project leveraging FHIR in which hospitals push standardized data directly to IKNL, creating near-real time insights into disease trends and treatment outcomes. This project focuses on data that is already discretely available in EHRs.
- PLUGIN: A federated platform where IKNL directly runs (complex) algorithms on EHR-data. FHIR provides a common data model that these algorithms can query. The federated nature of the platform ensures security while delivering precise answers for research.
- ACP: Focused on advance care planning in palliative care, this initiative looks to prepare primary care providers to adopt standardized data practices, benefiting primary care and patients.
For IKNL, Firely has proven to be more than just a technology provider, but rather an invaluable partner with comprehensive FHIR expertise, training programs, and user-friendly tools.
Real-World Impact
Although still in progress, IKNL’s collaboration with Firely has already delivered notable results:
Streamlined data exchange
Projects like R(H)ONDA and PLUGIN are accelerating IKNL’s ability to provide actionable insights and increasing the amount of information that is available for research. Several hospitals have connected to automatically populate the NCR through R(H)ONDA, reducing manual effort and increasing the availability of near real-time data for research—with the onboarding of additional sites in progress.
A pilot for PLUGIN has also shown that the system can successfully identify patients with head and neck cancer, and subsequently derive diagnoses, tumor stage and morphology. This has opened the door to adoption of more complex algorithms and application of large language models. IKNL expects to extend the pilot to two additional hospitals in 2025.
Scalable insights
By standardizing the data and automating processes, IKNL is benefiting from a broader set of near real-time data into disease trends, treatment outcomes, and health patterns across the population. These insights support data-driven decision-making that help allocate resources more effectively and improve health outcomes.
Engaging diverse stakeholders
Firely’s modeling tools have made it possible for clinicians and non-technical stakeholders to get involved in the profiling process and collaborate effectively to ensure everyone’s input is considered. “In my mind, there’s no doubt that Firely is the best company with the most expertise in this regard,” Melle Sieswerda says.
Collaboration across care levels
The ACP project showcases IKNL’s ability to support both primary and secondary care. “The goal is to prepare the field for efficient data exchange in primary care. By standardizing data registration from the start, primary care providers and patients can benefit from better data quality and interoperability. From there, IKNL can use the standardized data to support our own projects,” Harmke Koning says.
Looking Ahead
IKNL’s collaboration with Firely is laying the groundwork for a future where interoperability drives better cancer care and insights.
For IKNL, the goal is to scale nationwide, ensuring that every hospital in the Netherlands has a FHIR API and a Dutch common data model. “Once they have that, we’re halfway to where we want to go,” Melle Sieswerda explains. For oncology, IKNL is also involved in the HL7 EU FHIR Cancer Accelerator which seeks to define a European Common Data Model for cancer.
For their ACP project, they want to expand the project to include more comprehensive data sets for palliative care, “not only to help primary care but also to pave the way for better registry data downstream,” says Harmke Koning.
Transform Your FHIR Project
Are you involved in collecting data from various healthcare IT systems? Hear from Melle Sieswerda in our on-demand webinar, “Unlocking the Potential of FHIR for Registries”.
He dives into IKNL’s experiences in leveraging FHIR to streamline and automate data collection from EHRs, reducing the reporting burden on healthcare providers and enhancing data accuracy and availability for cancer research.
Looking to transform your registry operations like IKNL did? Connect with one of our experts today to explore how Firely can help your organization achieve real-time insights and improve patient outcomes.
