Open Web Technology attended the FHIR DevDays in Amsterdam. This year’s 8th edition gathered 442 participants from 32 countries. The event gathered professionals from diverse backgrounds including medical institutions, governmental organizations, large technology companies such as Google and Microsoft (main sponsors), consulting companies, as well as software product companies.
If you are new to FHIR, it stands for Fast Healthcare Interoperable Resource. It is the current version of the medical data exchange standard created by Health Level Seven International (HL7) in 1987. Its objective is to enable medical data to be stored and shared in a more interoperable and global way.
Since the creation of FHIR, an international community of medical professionals and software providers gathers on a bi-yearly basis at the FHIR DevDays to give each other the opportunity to learn about FHIR, to meet with colleagues and exchange ideas, and to apply what they have learned in their day-to-day work.
Why do we need FHIR?
During the last decades, most care providers have built highly customized proprietary information systems which are not based on the same set of standards. Meaning their data structures are customized to their business logic with little consideration of how other providers build their data structure. These organizations often run many highly coupled proprietary applications with outdated technologies.
Therefore, data can only be shared manually via email or be sent through PDFs. This incurs duplicates which are not correctly maintained and updated. Health records are then stored on an organizational scale and are difficult to exchange.
The main victim of this problem is the patient. The DevDays’ organizers laid an emphasis on the patient’s perspective. They invited patients to share the story of how they came up with solutions which helped their recovery. One particularly moving story was from Kristina and Kate Sheridan, respectively mother and daughter.
Kate was diagnosed at an early age with Lyme disease which triggered the development of two further chronic diseases simultaneously. For a decade, her condition kept on worsening because doctors did not understand what she had.
Kristina, her mother, was an astrophysicist at the time and realized it was easier for her to launch a satellite into orbit than for her to track her daughter’s medical data. After years of spreadsheets and plots, she decided to create a tool on which she could easily record the data from the different care providers they would visit. This tool also enabled her daughter to monitor her health status and indicate how she felt on a daily basis. The combination of the objective medical markers and subjective indicators allowed for doctors to decouple the overlapping diseases and create a treatment plan which in turn cured Kate!
How does FHIR address the shortcomings of health systems worldwide?
The HL7 organization has gathered an international community of volunteers from diverse backgrounds and nationalities to funnel experiences from all kinds of healthcare providers. Based on the pareto principle (80/20 rule), they created a standard which addresses most healthcare cases. They built a repository of resources depicting how to store the data. In order to ensure this standard is used, and that country-specific needs are addressed, they built a technology which is highly customizable. To be integrated in today’s technological ecosystem, FHIR supports RESTful architectures and has a strong foundation on Web standards: XML, JSON, HTTP, OAuth.
FHIR is still at an experimental state. Up until 2018, it was still at the Draft Standard for Trial Use (DSTU) Version. Since then, the normative version R4, is spreading like wildfire. An ecosystem of tools is arising. For example, Firely, the host of the FHIR DevDays, provides a set of tools to jumpstart a FHIR project (Forge, Vonk, Simplifier, FHIR-API). HAPI-FHIR is developing an open-source implementation of the FHIR specification in Java. Moreover, companies such as Microsoft and Google provide services such as the Azure API for FHIR and the Google Cloud Healthcare API which are FHIR compatible.
May Terry, principal at MITRE, outlined to us her proven methodology of how to involve doctors in the ideation process of building a FHIR based data model. Her agile process is specifically tailored to the challenge of designing a new implementation for an existing system with FHIR. The key takeaway from her methodology is that implementers should ensure the modelling be as transparent as possible to the doctors before it is even developed. Doctors can then actively participate in the design of the model and be involved during the whole process.
What are the key benefits of FHIR?
1. Electronic health records
As stated previously, the main issue patients face is that they are not able to track information from the multiple care providers they encounter. Few patients have created solutions to document their health records themselves, but these are not widespread and not built on a widespread standard.
Using an interoperable standard, like FHIR, would allow for systems to
centralize the patient’s data from multiple different source thereby
inducing two key benefits:
- Longitudinal health record: This would enable doctors to visualize the full medical history of the patient and help them better treat the patient.
- Active patient involvement: This would enable the patient to continuously participate in the recording of data on a day to day basis which would provide a clear picture in the case of chronic patients in particular.
2. Care Management
René Spronk, Firely trainer, outlined the use of FHIR in the context of care management. International organizations such as WHO or national organizations such as the swiss ministry of health define care guidelines, which doctors are supposed follow.
FHIR offers the possibility to express these care guidelines in a software language. This is called a computable care guideline (CCG) and can be implemented in healthcare system workflows. This allows to scale evidence-based practices across entire care delivery networks and bridges the knowledge gap between the guidelines and the doctor.
3. Operational and medical analytics
FHIR works closely with the leading terminology standards in the world like SNOMED CT, ICD, and LOINC. These code systems ensure providers use the same language to describe all elements of healthcare. Describing medical device with standardized coding systems allows for scalable operational analytics and better performance indicator comparison between organizations.
Disease and treatment characterization with unified standards allow to better understand how the care process occurs and enables medicine to leverage medical analytics and enhance care with artificial intelligence. This was brilliantly explained by Mohannad Hussain from Philipps.
The FHIR DevDays offered a clear picture of the current state of FHIR. It allowed us to meet the key stakeholders in the field and evaluate the actual state of interoperability worldwide. Given the existing tools and the size of the community, we see great potential in FHIR. However, there is still a lot of work to be done by implementers to provide robust and easily implementable solution.